For Caregivers & Families

A child you care about is dying. You want to offer your love and care, but you’re not sure how to go about it. Whether you are a parent, friend, or caregiver, may this guide help you turn your care and concern into action.

When a Child is Dying

In our hearts, we all believe that children aren’t supposed to die. As much as we wish otherwise, the sad truth is that children do die. Confronting this difficult reality is the first step you can take toward helping a dying child. It’s going to take time, so for now, try to accept the reality of the child’s medical condition, if only with your head. You will later come to accept it with your heart.

As you navigate through a heartbreaking situation, may these 10 insights serve as a guide to loving a child (and their family) through one of life’s most difficult times…the loss of a child.

1. Don’t Underestimate the Child’s Capacity to Understand

Children have the capacity to understand more than we give them credit for. Like adults, they deserve our respect and compassion—and our honesty. Sometimes adults, in an effort to protect themselves, assume that children are incapable of understanding or should be protected from the truth. These adults often don’t talk directly to dying children about their prognoses, which can leave the children feeling alone and isolated.

Children can cope with what they know. They can’t cope with what they don’t know. Dying children deserve an atmosphere that creates open, two-way communication. 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 child’s lead. Always listen first as you participate in 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.”

2. Be Honest with the Child About Their Coming Death

As the child comes to comprehend their illness and its severity, explain to them that they will likely die, making sure to use language they will understand. The conversation may be the hardest thing you have ever done, but honest love is what a dying child needs most.

Depending on their age and developmental maturity, they may not immediately (or ever) fully understand what their illness means. But they will begin to incorporate the notion of death into their remaining life and will have the opportunity to think about it and ask questions. They will also have the privilege of saying goodbye.

Do not try to protect the child by lying about their condition. If a dying child is told they are going to get better but everyone around is acting down and defeated, they will notice. This may make the child feel confused, frustrated, and perhaps angry.

Instead, show your love and respect by being honest and open with them and helping them understand that they are dying.

3. Encourage Open Communication, But Do Not Force It

As caring adults, we should encourage honest communication between 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. In other words, they will accept the reality of their circumstances in small doses over time. They aren’t able to take all the information in at once, nor will they want to.

Answer only what the child asks. Don’t overrespond out of your own anxiety. Remember—children will determine with whom they want to share their pain. Often, a child wants to protect their parents or other close adults and will adopt a “chin up” attitude around them. This is a normal response and should be respected.

4. 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 the 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.

5. Tune In to the Dying Child’s Emotions

Aside from the considerable physical toll terminal illness can take, dying also affects a child’s head, heart, and spirit.

While you shouldn’t guess at or make assumptions about a child’s feelings, 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. Don’t try to help the child “get over” these feelings; simply enter into their feelings and validate them.

6. Help the Dying Child Live to the Fullest

Terminal illness presents human beings with an exceedingly difficult and contradictory challenge: you are dying, 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 die, 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 them comfortable. Create special, memorable moments. Don’t completely abandon your normal routine (this may make the child feel out-of-control and unprotected) but do work to make each remaining day count. Above all, spend time with them. Make sure that the people who mean the most are around 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. When possible, nurture the child’s friendships when possible. Arrange a special party. Make play dates with one or two best friends. Help two children write letters back and forth when personal contact isn’t possible.

7. Take Advantage of Resources for the Dying

Local hospices are well-staffed and trained to help both a dying child and their family. The hospice’s mission is to help the dying die with comfort, dignity, and love, and to help survivors cope both before and after the death. Other organizations, like the Make-A-Wish Foundation, help dying children find joy in their remaining lives.

8. 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 also be available to support and nurture other family members and close friends through the grief and stress of the situation. The adult’s 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, or clean the house. Listen when they need to talk. Sit with the ill child to give parents a break. Offer to babysit the other children in the family. While words may be inadequate, your supportive behavior will be remembered forever.

9. Don’t Forget Siblings

Don’t forget the impact a dying child’s illness is having on their siblings. Because so much time and attention are focused on the dying child, his brothers and sisters may feel emotionally abandoned. Go out of your way to ensure their needs are also being met.

10. 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. May these 10 insights help you lovingly care for each person affected by the death of a child.

*Based heavily on a brochure by Dr. Alan Wolfelt called Helping a Child Who is Dying. Dr. Alan Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about helping children in grief. Published with permission.

If you’re reading this, you have a friend who is dying, and you’re probably dealing with a lot of feelings. Facing the death of someone you care about is extremely difficult for everyone involved, but hopefully, these words will guide you toward knowing how you can help and support your friend with loving actions during their final days.

When a Friend is Dying

First, it’s important to confront the difficult reality that someone you care deeply about is dying. It may take time to accept the fact of your friend’s impending death. In some cases, it may not be until after death has occurred that you fully and finally acknowledge the reality. This is normal.

If you just aren’t ready (or able) to accept your friend’s coming death just yet, that’s okay. Instead, try to come to grips with the reality of their medical condition, if only with your head. You will later come to accept it with your heart.

Now, let’s talk about six ways you can emotionally support your friend and make their final days precious and meaningful.

1. Give the Gift of Presence

Perhaps the greatest gift you can give your dying friend is the gift of your presence. Particularly if you live nearby, you have the opportunity to demonstrate your support by being there, literally, when your friend needs you most. Visit your friend at the hospital or at home—not just once, but throughout the remainder of their days. Rent a movie and bring popcorn. Play cards or board games. Sit together and watch the snow or rain fall. Your simple presence will say to your friend, “I am willing to walk this difficult road with you and face with you whatever comes.”

Remember to respect your friend’s need for alone time, though, and realize that their deteriorating physical condition may leave them with little energy. Give your friend time alone when they need it.

2. Be a Good Listener

Your friend may want to openly discuss their illness and impending death, or they may avoid discussing it entirely. The key is to follow your friend’s lead. Keep in mind that your friend will experience this illness in their own unique way. No two journeys are the same.

Allow your friend to talk about their illness and their grief at their own pace. And while you can be a “safe harbor” for your friend to explain their thoughts and feelings, don’t force the situation if they resist. Give them space and time to think and feel what they need to think and feel.

If you listen well, you can help your friend cope during this difficult time. Both your physical presence and your desire to listen without judging are critical helping tools. Don’t worry so much about what you will say. Just concentrate on listening to the words your friend is sharing with you.

3. Learn About Your Friend’s Illness

It’s said that “People can cope with what they know, but they cannot cope with what they don’t know.” You will be better equipped to help your friend if you take it upon yourself to learn about their illness. Consult medical reference books at your local library. Request information from educational associations, such as the National Cancer Institute or the American Heart Association. With your friend’s consent, you might also talk to their physician.

If you educate yourself about the illness and its probable course, you will be a more understanding listener and can prepare yourself for the reality of the illness’s later stages.

4. Be Compassionate

As you spend time with your friend, give them permission to express their feelings about the illness without fear of criticism. After all, everyone needs time to vent or express what’s on the inside. But again, let your friend take the lead. Learn from your friend; don’t instruct or set expectations about how they should respond. Think of yourself as someone who “walks with” the dying person, not “behind” or “in front of” them.

Never say, “I know just how you feel.” You don’t. Comments like, “This is God’s will” or “Just be happy you have had a good life” are not constructive. Instead, these kinds of comments are often hurtful and may make your friend’s experience with terminal illness more difficult. If you feel the need to console your friend, simply remind them how loved they are.

5. Offer Practical Help

While your friend may have family around to help, there are many ways you can still assist with the activities of daily living. Preparing food, washing clothes, cleaning the house, watching the kids, or driving your friend to and from the hospital for treatment are just a few of the practical ways of showing you care. Make sure to coordinate with family members so that there’s no added stress from miscommunication.

6. Stay in Touch

If you are unable to visit your sick friend due to distance or other circumstances, write a note or make a call or send a gift or make a video. What should you say? Tell your friend how much they mean to you. Reminisce about some of the fun times you’ve shared. Promise you’ll write again soon—and then follow through on that promise. Avoid sending a generic greeting card unless you’ve personalized it with a heartfelt message.

Your friend is likely facing a lot of emotions as they journey toward death. Fear, shock, anger, sadness. No matter how they’re feeling, they need you, your love, and your friendship to make it through the coming days. Use these six actions to show your friend just how much you care and make memories that will be precious to you both.

*Based heavily on a brochure by Dr. Alan Wolfelt called Helping a Friend Who is Dying. Dr. Alan Wolfelt is a respected author and educator on the topic of healing in grief. He serves as Director of the Center for Loss and Life Transition and is on the faculty at the University of Colorado Medical School’s Department of Family Medicine. Visit www.centerforloss.com to learn more about helping a friend in grief. Published with permission.