Confusion
My brother has cancer that has spread to his brain. Sometimes I can’t understand what he’s trying to say and he’s always fumbling with his blankets. Does he know who I am? Can he understand what we’re saying to him?

From what you describe, your brother is showing signs of confusion. By understanding more about confusion, you can better understand what he is going through and what can be done.

Confusion occurs when the brain is not working properly. Confused people often have problems remembering, paying attention, speaking, thinking, and understanding fully what is going on around them. Confusion can seem to come and go. This may explain why your brother seems fine at times, and why sometimes he does not make sense.

People with a serious illness often become confused. Many factors can contribute to this, and it is not always possible to determine one exact cause. These are some common factors that can cause confusion:

  • infection,
  • medications,
  • low levels of oxygen in the blood,
  • pressure on the brain caused by tumor or injury,
  • chemical imbalances in the blood,
  • pain,
  • decreased functioning of all the body organs as a person nears death.

People who are confused often say or do things that are out of character. It is common for confused people to feel threatened by others and by changes in their surroundings. They may be reluctant to trust family, friends and caregivers, and they may think others are trying to harm them. These paranoid thoughts may be considered a form of self-protection. If someone cannot sort out the world any longer, it is safest to consider everything a threat. In this state, people can say or do things that are hurtful to people they know.

Confused people also can misinterpret things. For example they may think a coat rack is a person, or that clothing on the floor is an animal; these are called illusions. At other times, people can experience hallucinations, that is, seeing, hearing, or feeling things that don’t exist at all. Someone having hallucinations can be frightened, or comforted or not distressed at all. Sometimes people see visions of relatives who have died, or who are living but not actually present. Confused people may become restless, anxious, agitated and have trouble resting.

Confusion can be distressing both to your brother and to you. Like many relatives of confused people, you may say "This isn’t my brother." You may feel hurt by some of what he says or does. Your brother’s words and actions may be so inconsistent with who he was before he became confused that you may feel you’ve lost your brother, even before he dies. It’s important to remember that what you’re seeing is the result of changes in the way his brain is working. Your brother is not in control of how he’s thinking or behaving. His confusion is a part of his disease; if he says or does things that are strange, this is not a reflection of his feelings for you.

Your brother may become more comfortable if he has familiar things around him. It may help to put some pictures of family and things he enjoys near his bed. A calendar or clock can help him keep track of time. If your brother is having hallucinations that are comforting or at least not frightening, it’s better to acknowledge that they’re comforting, rather than to try to re-orient him to reality. If your brother seems restless, frightened or threatened, it’s usually best not to contradict him. Disagreements or arguments may make him feel more threatened. It’s best to acknowledge the distress he must be feeling and to assure him you’ll work with him to try to sort things out.

It’s important to let the health care team know what you’re seeing. It may be possible to investigate the cause of the confusion, and there may be medications to reduce the anxiety or restlessness that it causes. If the health care team knows what’s causing the confusion it may be possible to treat the cause.

It can be painful to question whether your brother knows who you are and what you’re saying. There’s no way of knowing how much people hear and process when death is near. We do know, however, that hearing is usually strong, even near death. It may be very meaningful to speak to your brother whether he seems alert or not. You or other visitors may feel the need to do or say something at his bedside. Often, though, the presence of family or friends near the end is more important than what’s done or said. Families often just go on visiting, reading, laughing and joking, telling stories, or watching television, in other words, being a family. This may well be what pleases your brother most, knowing family is present and that you’re supporting each other.