Caring for someone in denial
Having a terminal illness can lead some people to avoid thinking about what they’ve been told, or act as though nothing’s wrong. Pretending that nothing is wrong is called denial, and it’s a common reaction when someone experiences a major change in their life.
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Denial is when someone pretends that nothing is wrong. It can change over time, for example, some days the person may be more in denial than others. There are also different levels of denial, some can be useful and others less so.
It’s common for someone to avoid thinking or talking about something because it’s distressing. Some people may find it hard to accept certain side effects of treatment or being ill, like hair loss or mobility problems, but they understand their overall situation. And some people refuse to accept that anything is wrong at all.
Extreme denial is an unconscious reaction, which means the person doesn’t even realise they’re doing it. Try not to see it as a good or bad thing, or try to change it. It’s not a reflection on you as a carer.
Denial can sometimes give a person time to adapt to their situation, by helping them to process distressing information at a manageable rate. It can help to have the support of family and friends around them, so they feel safe and able to do this. Being worried about the practical implications of their illness, such as how to get treatment and care, can also affect their acceptance of the situation.
Denial may also be linked to someone’s cultural or religious beliefs. If this is the case, you might like to get support from a faith leader or chaplain. See our directory of useful organisations or read more about spiritual and emotional pain.
Some people hide how they feel because they’re worried about being a burden or losing their independence. You might find that they’re more realistic about their illness around some people but not others who they think will be particularly upset. They might also be frightened that people will react badly if they say how they really feel or worry it will affect their ability to stay in their own home. Reassuring them and being patient might help.
Denial could also be related to more practical worries, for example having enough money or help around the house. If this is the case, there may be financial help available.
Terminal illness affects everyone involved, not just the person who’s ill. You may feel frustrated or unsure about what to do when your relative or friend is in denial, but don’t feel you can talk about it. You may feel you need to keep pretending for the sake of your relative or friend, to keep their spirits up. This is called collusion, and can mean that you find it hard to come to terms with things or may even be in denial yourself.
Try to listen to your relative or friend as much as possible, without judging or trying to change things. It may be the only way for them to manage at that time.
It can help to assess the person regularly by talking about changes and exploring them. Denial can change over time and they may be more honest about their situation on some days than others.
In some situations, the person may refuse treatment or not want you to see important information about their care. They may not talk about doctor’s visits or want you to be with them when they talk to healthcare professionals. They may miss or cancel appointments, or may refuse to let you check their symptoms.
Sometimes, denial can have a positive effect. Some people find it helps them get on and enjoy life. But denial can also lead to people having unrealistic hopes about a cure, or using alcohol and drugs as a way of coping. The person in denial may have feelings of helplessness or being out of control. Giving them choices about their care and treatment can help them to feel a bit more in control again, and help them accept their situation.
If your relative or friend starts refusing treatment or medication and this is putting them in danger, it may be appropriate to intervene. Speak to the district nurse or your GP, or read our information about protecting the person you’re caring for.
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