Changes at the end of life

Each person’s experience of the last few days of life will be different. It can be hard to know exactly what will happen, or how quickly things will change. Usually, you slowly become a lot weaker and have very little energy. But sometimes changes happen more quickly. You may:

  • find it hard to move around and need help getting from your bed to a chair
  • need to spend most, or all, of the day in bed
  • lose interest in eating and drinking
  • sleep a lot and feel sleepy when you are awake
  • feel disorientated and unsure whether you are dreaming
  • dream about people who are not there or that you knew in the past – your mind may think about old memories
  • lose interest in your surroundings and the people around you, even your close family members.

Physical care

During your last few days, you will need a lot of help with things like washing and changing your clothes. It may feel strange to need so much help. But you may also become very close emotionally to the people who are caring for you at this time. If your carers need help to wash and bathe you, a district nurse or your specialist nurse can arrange this.

They can also show your carers how to:

  • lift and move you safely and comfortably
  • regularly moisten your mouth if it is dry, including putting lip balm on your lips to stop them getting dry and cracked
  • moisturise and look after your skin to help stop it getting sore
  • make sure you are in a comfortable position if you cannot move yourself, and help you change position regularly – this helps stop your skin getting sore.

A district nurse can also assess whether you need any pressure care aids to help keep you comfortable. If you do, they can arrange things for you. These aids include:

  • cushions for chairs
  • mattresses for beds
  • special beds with pressure-relieving mattresses.

There may be times when you do not need your nurses or carers to do anything. You can just sit or lie quietly, with your family and friends sitting with you. This can be a very intimate and special time. You can tell them if you would like to talk, be quiet or listen to music. You may want some time on your own. If you do, you could ask your carers to leave you alone for a while. But also tell them if you would like someone to be with you all the time. It will help your carers plan your care.

Symptoms

If your symptoms change, your doctor or nurse may change your medicines so your symptoms are well managed. They may also stop some medicines if you do not need them any more. And if you develop new symptoms, they can give you new medicines.

If you find it hard to swallow, your doctor or nurse can give you your medicines:

  • as an injection
  • through patches stuck onto the skin
  • through a syringe pump.

‘Just-in-case’ medicines

Your GP, a district nurse or the palliative care team may suggest leaving a small case or box of medicines in your home in case you need them. These are sometimes called ‘just-in-case’ medicines. If you get more pain or start to feel or be sick, getting medicines quickly can be difficult, especially at night or weekends. If you have just-in-case medicines at home, a nurse or doctor can give them to you straight away if you need them.

Just-in-case medicines usually include injections to help with:

Nearing death

The thought of being close to death can be very frightening. Death is a natural process, but it is normal to worry about what will happen.

You may want to have a religious or spiritual adviser with you. There may be certain religious practices you want to follow. It is important to do whatever feels right for you.

It can be comforting to have someone with you as you die. Not everyone has family or friends who can do this. Some places have volunteers who can sit with you when you are nearing the end of your life. Soul midwives and doulas are people who can be with you when you are close to the end of your life. They are there to provide company and spiritual support during the dying process. You usually need to pay for their services.

What usually happens

Dying is often very peaceful. You usually slip into a deep sleep, where it gets harder and harder to wake up.

Usually, you slowly become completely unconscious. You cannot be woken at all, but may still be able to hear and be aware of the people around you. There might be times when you are awake and can talk, and then you slip back into unconsciousness.

If you are at home, your carers can contact your district nurse, specialist nurse or GP 24 hours a day, 7 days a week. This could be if they are concerned you are in pain or have other symptoms that are hard to control.

The GP or nurse can:

  • give you medicines to control your symptoms, either as an injection or through a syringe pump
  • talk to you about any concerns you or your carers have
  • reassure you.

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