Cancer

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.

Misunderstandings are common when terminal illness and prognosis are discussed. Most people, including some healthcare providers, are uncomfortable with the subject. Because of this, or because they want to prevent distress, health providers may use vague terms that are open to interpretation. Two people can be using the same words, but be talking about different things.

For example, the word "prognosis" can have different meanings. It’s possible that a physician uses the word to mean one thing, such as chance of cure, while you may be thinking about something else, such as your father’s life expectancy or quality of life.

Some healthcare providers don’t like to predict life expectancy because it’s difficult to estimate and rarely accurate. At early stages of an illness, forecasts are based on published studies. As the illness progresses, such studies become less relevant. There are so many factors that come together to influence a person’s health. This is why one person’s experience can be very different from another person’s experience, even if they are both confronting similar illnesses. Even so, it’s reasonable to ask if your father’s life expectancy can be measured in days, weeks, or months.

A guide used by palliative care providers is something called the momentum of change. When someone’s condition changes from one month to the next, there may be months of life left. Changes from week to week can mean weeks left. Eventually, your father’s energy and strength will decrease until he’s spending most of his time in bed. His condition may change from day to day and then hour to hour, at which point, he likely has days then hours of life left. This is a guide only, as something may happen unexpectedly.

It helps to remain hopeful, but plan for even the worst possibility. If you or your father need to address some matters, then now is good time to do it, while your father is still able. People often wait too long to tie up financial and other affairs, or to connect with other loved ones.

Families and patients vary greatly in how much they want to know. Healthcare providers may not be sure how much detail to give, and may look to you for cues. You can help by being clear about how much information you wish to have.

It’s common that people with progressive illnesses want to avoid certain facts. It’s especially common if they’re not responding to treatment or if their health is declining. In your grandmother’s case she may be ignoring her situation because she can’t cope, or she may be saying what she thinks her health care providers want to hear.

It can be difficult and frustrating to support a loved one who isn’t facing reality. It’s common to feel helpless; you don’t want to take away hope, but you do want to deal with the issues that come up when someone is terminally ill. It’s best to be upfront with your grandmother. This is a good approach generally, but in this case there are additional reasons.

A physician has an obligation to be open with a patient about all aspects of care. It’s essential to establishing trust between the physician and patient, which is the basis for care. Physicians feel uncomfortable having conversations with family or friends behind a patient’s back. The physician is in an awkward spot if there’s new information from a source that can’t be revealed. If your grandmother senses this has happened, it could erode the trust she needs to have in her physician. Of course, if she faces a physical risk somehow, then this needs to be considered.

Trust is important also between a person who’s ill and family and friends. A person with a terminal illness is vulnerable and needs to feel safe. Like others who are ill, your grandmother needs independence, dignity, and a role in the family as much as possible. If your grandmother senses that people are talking to her physician without telling her, it can diminish her dignity, her respect for others, and decrease her sense of control over her own life. Such conversations are meant to be confidential, but one way or another they usually end up getting back to the person who’s ill. Lost trust is not easily regained.

You may be worried that by not being upfront with her physician your grandmother is missing out on important treatment options. Be assured that if your grandmother has significant health issues they will be evident anyway. Such issues are hard to hide or ignore. Her physician likely will be aware of them, and aware also of the common desire to put up a good front. Your grandmother’s physician may not want to address this explicitly, and may be trying to find a way to gently let your grandmother know that her health is deteriorating in the midst of few treatment options.

It’s important to be open with your grandmother. Tell her you’re concerned that she’s not telling her physician what’s really happening. Consider asking her permission to come along when she visits her physician, so that you can ask questions. Alternatively, you can ask permission to phone the physician yourself. The physician would then check back with your grandmother.

Your grandmother has to approach her situation in her own way, and that may change with time. Still, it can be hard on you and others around her. Consider telling her how you’re feeling. If you’re open, it may help her open up also.