Eating and Drinking

• As your parent or sibling gets weaker their interest in food will decrease. They may have trouble swallowing and digesting food.

• When this happens they will stop being given food. Small sips of water can still be given but sometimes even this is stopped. 

• As death approaches there is really no need for food and water.

Breathing

• There will be changes to their breathing patterns. It can vary from shallow to deep and rapid to slow.

• One of the most upsetting aspects of this is where their breathing becomes noisy or they develop what sounds like a rattling in their chest (often called the “death rattle”).  This is caused by the shutting down of the body’s normal functions and body fluids getting trapped in parts of the body.

• You may also hear or see what is called "cheyne-stokes breathing" where they take a breath and then don’t seem to take a breath for a very long time.

Circulation

• You may notice that parts of their body start to feel cold and they may lose their colour and start to look bluish. The hands and feet are usually most affected.

• This happens because circulation starts to slow down. There isn’t anything that needs to be done and it is part of the natural process.

Consciousness

• They may remain conscious until just before they die or they may lapse into unconsciousness and then remain that way until the end. Some people may wake and then sleep alternately.

Hearing

• Even if they are unconscious, your parent or sibling may still be able to hear you. In fact they say that hearing is the last sense to go. 

• If you want you can talk to them and let them know you are there.

Movement

• At this stage they may be moving very little. The nurses or carers will try to keep them in the most comfortable position. They will need help with almost everything that they do.

• As their body starts to stop working, they may become incontinent (lose control of their bowels and bladder) and this can cause them to become restless.

• Sometimes they will have involuntary movements and their hands, arms, legs or face may jerk. This can be a bit scary or upsetting for you.

Terminal Restlessness

• Your parent or sibling may become agitated, anxious or very frightened at this stage. 

• They may want to try and move around, they may say things that are quite random and not like them at all. This can also be freaky and upsetting.

Remember: Do what you feel comfortable with but know that you may not get another chance to do or say the things you want.

Don’t be afraid to ask for some support if there is something that you want to do but are really scared to do it.