Chapter 5: Children at the bedside
I thought it was going to easier to explain things to my daughter – I was a nurse, after all. It was the hardest thing I had ever done because this was personal and so close to the heart for me.
While the appropriate amount of time at the bedside will vary based on both the developmental age and the personality of the child, children of all ages can benefit from being included.
It is important to prepare children for what they are likely to experience at the bedside. If the person is dying at the home of the child, the child will have the advantage of seeing the changes more gradually, which can be less startling. Some children will need a lot of information, including what could happen as death draws near, while others will need information only about what is happening now. Follow the child’s cues about how much information they want.
Below are some areas that may need to be addressed at various times, regardless of where the person is dying. Click on each phrase for more information to help with preparing children to visit with the person who is dying and explaining what is happening to that person.
Does it need to be quiet in room? Is there equipment in the room that should not be touched by children, such as a pump for pain medication? If the child needs a break from being at the bedside, is there another area they can spend some time?
Explain to children that dying is a very tiring process. The person may be very weak and sleepy, or they may not be waking up at all anymore. However, even if they are not awake, they may still be able to hear, and they may know who is around them. In the hours before death occurs, even though the person may seem as though they are sleeping, their eyes may be open and not blinking at all. They may even wake up and talk briefly before dying, which can be very surprising for everyone.
Explain to children that when a body gets very close to death, it usually does not need anything to eat or drink. It is important to help children understand that the person is not eating and drinking because their body is shutting down; many children will be concerned that their loved one’s body is dying because it is not eating or drinking. Even if the person were to eat and drink, it would not help them stay alive any longer.
Many people will receive pain medication toward the end of life. Children tend to think of medicine as being something people take only in order to get better. Explain to children that pain medication is to help the person feel more comfortable – it will not help them get better or stop them from dying. Pain can usually be well controlled at the end of life. If, however, the person is experiencing a lot of pain, avoid having children visit until the pain is under control.
Due to the changes happening within the bodies of people who are dying, they may become confused or agitated. They may call people by the wrong name or not know where they are. They may do things such as pick at their bedding or become very restless. There are medications that can help with this.
Let children know if the person’s skin colour is different than usual. Perhaps Grandma’s skin is very yellow because her liver is not working properly anymore. During the final hours of life, the arms and legs may become very cold and parts of the body (such as lips, knees, fingernails, and toenails) may turn a blue colour.
When a body is getting close to dying the breathing pattern will often change. At times it may be irregular with long gaps between breaths, while at other times it may be rapid, regular, and deep. In the final days of life, the breathing may become very noisy and even make a gurgling sound, which can be upsetting for children to hear. It can help to explain this type of breathing to kids as being similar to snoring; it can sound horrible to everyone else yet not cause any discomfort to the person who is doing it. Let children know how the person’s breathing has changed before the children enter the room.
What may help
It is common for parents to be uncertain of what to expect of the dying process and, thus, find it difficult to prepare their children. Do not hesitate to ask members of the professional care team to participate in these conversations.
When having these conversations with children, use simple, concrete language. Call the illness by its name and avoid using euphemisms for dying and death. For example, a father’s liver cancer can be described as, “Dad has an illness called cancer. It is in his liver. The liver cancer is causing his body to die.”