A child you care about is dying. You want to offer your love and care, but you are not sure how to. Whether you are a parent, friend or caregiver, this article will guide you in ways to share your care and concern with the child.
We all believe in our hearts, children aren’t supposed to die. Unfortunately children do die. Confronting this difficult reality is the first step you can take to help the dying child. You will probably come to accept the fact of the child’s impending demise over time, and it may not be until the child actually passes that you fully and finally acknowledge the reality. This is normal. For now, though, try to accept the reality of the child’s medical condition, if only with your head. You will later come to accept it in your heart.
Don’t Underestimate the Child’s Capacity to Understand
Children have the capacity to understand more than we think. Like adults, they deserve respect, compassion and honesty. Sometimes adults, in an effort to protect themselves, assume that children are incapable of understanding or should be protected from the truth. They don’t talk directly to the dying child about their prognoses, which can leave them feeling alone and isolated. A child can cope with what they know. A child can’t cope with what they don’t know. A dying child deserves an open, two-way communication with the adults and doctors. Many terminally ill children will go back and forth between wanting to know details about their illness and not wanting to acknowledge they are even sick. It is critical to follow the lead of the child. Always listen first as you support open dialogue about any feelings, concerns or questions they might have. If they ask something and you don’t know the answer, simply say, “I don’t know.”
Be Honest with the Child about the Coming Demise
As the child comes to comprehend her illness and its severity, explain to the child they will likely pass away-in language the child will understand. This may be the hardest thing you have ever done. Honest love is what the dying child needs most. Depending on the age and developmental maturity, he / she may not immediately (or ever) fully understand what this means. The child will begin to incorporate the notion of death into her remaining life and will have the opportunity to think about it and ask questions. She will also have the privilege of saying goodbye. Do not try to protect the child by lying about the illness. If the dying child is told he / she will get better will notice the disparity between this false hope and the way others around he / she are acting. The child will be left confused, frustrated and perhaps angry. We show our love and respect for all children by being honest and open with them. We show our love and respect for dying children by helping them understand that they are dying.
Encourage Open Communication, but Do Not Force It
As caring adults we should encourage honest communication among the child, caregivers, family and friends. However, we should never force it. Children will naturally “dose” themselves as they encounter the reality of the illness in their life. They aren’t able to take in all the information at once, nor will they want to.
Answer only what is asked in the child’s terms. Don’t over-respond out of your own anxiety. Remember, children will determine with whom they want to share their pain. Often, the child wants to protect his parents or other close adults and will adopt a “chin up” attitude around them. This is a normal response and should be respected.
Watch for the Child’s Indirect Communication
Children, particularly seriously ill children, are not always direct about their thoughts and feelings. They may make statements, display behaviors or ask questions that indirectly suggest their understanding or awareness of a situation. These cues reflect underlying needs and deserve loving responses. Pay special attention to the child’s non-verbal means of trying to communicate any needs or concerns.
What the Dying Child May be Feeling
Aside from the considerable physical toll terminal illness can take, dying also affects a child’s head, heart and spirit. While you wouldn’t want to prescribe what a child might feel, do be aware that they may experience a variety of emotions. Fear, anxiety, anger, sadness and loneliness are just a few of the emotions they may feel-one at a time or simultaneously. These feelings are a natural response to serious illness. Perhaps you can be among those who enter into the child’s feelings without thinking they have to help the child “get over” these feelings.
Helping the Dying Child Live
Terminal illness presents human beings with an exceedingly difficult and contradictory challenge: you are going to die; you know you are dying, yet it is your nature to want to live. Dying children often feel this tension, too. If the adults around them have been honest, they understand that they will soon pass away, but they still want to live and laugh and play as often as they can.
Help the dying child live happily. Do what is in your power to make him / her comfortable. Create special, memorable moments. Don’t completely abandon the child’s normal routine (this may make him feel out-of-control and unprotected), but do work to make each remaining day count. Above all, spend time with him. See the people who mean the most to him are around him as often as possible. Peer relationships are very important to children, and the illness will likely create some social and physical barriers to these friendships. As an adult, you can see that friendships continue to be nurtured when possible. Arrange a special party for the dying child. Make play dates with the child’s one or two best friends. Help the children write letters back and forth when personal contact isn’t possible.
Help the Child Take Advantage of Resources for the Dying
Local hospices are well-staffed and trained to help both the dying child and the dying child’s family. Their mission is to help the dying pass away with comfort, dignity and love, and to help survivors cope both before and after the demise. Other organizations, like the Make-A-Wish Foundation, help dying children find joy in their short remaining lives.
Support Parents and Other Important Adults in the Child’s Life
A child’s terminal illness naturally impacts everyone who loves the child. Not only should you be supportive of the child, you should be available to support and nurture other family members and close friends. The adult response to the illness will influence the child’s response. So, in supporting adults you are supporting the child.
Perhaps you can be a caring companion to the family and help in practical ways. Offer to provide food for the family, wash clothes, cleaning the house. Listen when they need to talk. Sit with the ill child to give parents a break. Help with other children in the family. While words may be inadequate, your supportive behavior will be remembered forever.
Don’t Forget Siblings
Take special note of the dying child’s siblings. So much time and attention is being focused on the dying child right now, his brothers and sisters may feel emotionally abandoned. Go out of your way to ensure their needs are being met, as well.
Embrace Your Spirituality
If faith is part of your life, express it in ways that seem appropriate to you. During this difficult time you may find comfort and hope in reading spiritual texts, attending religious services or praying. Allow yourself to be around people who understand and support your religious beliefs.
A Final Word
All children, terminally ill or not, have the right to be nurtured, to be children and to make choices that impact their lives. There is nothing more difficult for families than confronting the death of a child. As caring adults, we have a responsibility to maximize the quality of life for the child, the family and friends.