What is terminal restlessness? The end-of-life phenomenon that could change your personality before you die

In recent years, we have found out more about the common phenomenons that can happen in the few days or weeks before death. We have been able to do so through the help of hospice nurses and doctors, whose goal is to educate families so they know what to expect if faced with these situations. Today, we focus on terminal restlessness, a phenomenon that can change a dying person's personality.

What is terminal restlessness?

Terminal restlessness, or terminal agitation or delirium, is a condition that can happen in the last few days of someone's life. The dying person may become agitated, angry, and show signs of cognitive decline, making them sometimes unrecognisable to their loved-ones. According to Very Well Health, terminal restlessness has got several causes, but it is often not treated, as the patient is expected to pass away shortly after.

This condition can be especially distressing for families, as they often feel powerless and shocked at their loved-one's change in personality. The best course of action if it does happen is usually to react calmly and accept that this is their way of coming to terms with the end of their life. According to Very Well Health:

Many emotions can come simply because you know death is near. Your loved one's terminal restlessness may add to your distress because of what they say and do. This may cause you to feel guilty about how you are handling your loved one's dying process.

Causes and consequences of terminal restlessness

Terminal agitation can come from an array of causes, such as medications, cancer treatments, poorly managed pain, organ failure and fever. However, one cause is often overlooked: it may very well be an emotional reaction to one's approaching death. People who suffer from terminal restlessness are only treated if they are putting themselves or others in harm's way. If the person is becoming a danger to themselves or others, they can be treated with mild tranquillisers such as benzodiazepines and other anti-psychotic drugs.

The main symptoms of terminal restlessness are angry or emotional outbursts, agitation, confusion and lack of attention. These may be difficult to bear for the families as they come to terms with their grief. Remember that these symptoms are not a reflection of your loved-one's opinion of you, but a reaction to their pain, whether it is physical or emotional. People suffering from terminal agitation may also pull at their sheets, clothes and IV lines. Others might seem confused and lost in their own minds.

If you are a carer in need of help, do not hesitate to contact Carers UK at this number: 0808 808 7777.

Read more:

⋙ You can tell someone is about to die by these signs on their feet, knees & hands

⋙ Hospice nurse reveals 'messy' phenomenon that happens in your body when you die

⋙ Visioning: Hospice nurse explains this common phenomenon which happens weeks before dying

Sources used:

Very Well Health: Recognizing Terminal Restlessness at the End of Life

Crown Hospice: End-of-Life Personality Changes: Dealing with Anger Before Death