The Final Days – what caregivers and relatives can expect

Woman holding senior woman’s hand on bed

Article from Cancer Research UK

What happens in the last days of life is different for everyone. But it can help caregivers and relatives to know a little about what to expect. 

Common concerns

Knowing that you or a loved one is close to dying can be very difficult. The information on this page is for your carers, relatives and friends. They often worry that they won’t be able to cope or know what to do.

It is very difficult to give exact details. But we can give you some general information about what might happen and what you can do to support your loved one through their dying process.

Letting go

Even if the physical body is ready to shut down, some dying people might resist death. They might still have issues they want to resolve or relationships they want to put right.

It is important to understand these things. Let your loved one know that you’re there for them and will help them with any of these issues. Allow them to share any memories or feelings they have.

Reassure them that it is all right to let go and die whenever they are ready. Some people will hold on until they have heard these words from the people they love. So letting them go can be one of the most important and loving things you can do for them.

Physical changes

The body begins its natural process of slowing down all its functions. How long this takes varies from person to person. It might take hours or days.

The dying person will feel weak and sleep a lot. When death is very near, you might notice some physical changes such as changes in breathing, loss of bladder and bowel control and unconsciousness.

It can be emotionally very difficult to watch someone go through these physical changes. But they are part of a natural dying process. They don’t mean that the person is uncomfortable or in distress.

The doctors and nurses looking after the person will regularly check for these changes. They will do all they can to make your relative or friend as comfortable as possible during their death.

If you are looking after someone at home while they are dying, you should have support from a specialist community nurse, district nurses and the GP. They can answer your questions and help make home nursing easier for you.

Sleepiness and difficulty waking (semi consciousness)

People who are dying often sleep a lot. They might not respond when you try to wake them. But this doesn’t mean they can’t hear you. Hearing may be one of the last senses to be lost.

So it is important not to stop talking to them and comforting them. You can sit close to them and hold their hand.

It is important not to say anything you wouldn’t want them to hear. It’s also a good idea to tell them when you go into or leave their room.

Difficulty swallowing or not wanting to eat or drink at all

There will come a time when the dying person won’t want to eat or drink anything. It is important not to try and force them to eat or drink. This will make them uncomfortable.

If they are still awake, you can give them small pieces of ice to suck or sips of fluid. This will keep their mouth moist. You can put lip balm on their lips to help stop them from getting dry and sore.

Even if they can’t take anything into their mouth, you can moisten their lips and mouth every 1 to 2 hours. Use aqueous cream for the lips.  A water-based saliva replacement gel can help with dry lips and a dry mouth. Your GP or district nurse can provide this.

Loss of bladder and bowel control

The dying person might lose control of their bladder and bowel. This happens because the muscles in these areas relax and don’t work as they did. This can be distressing to see and you might worry that they may feel embarrassed. The nursing staff will do all they can to protect the bed and keep your relative or friend as clean and comfortable as possible.

If you are caring for the person at home, the district nurses and specialist nurses can arrange for you to have protective sheets or pads for the bed. They might also be able to arrange a laundry service for you, if necessary. As people become very close to death and are not eating or drinking, the amount of urine and stools they produce gets less and less.

Restless movements (as though in pain)

Many people who are dying, and the people around them, worry that they will be in pain. Some people don’t have pain. But if a person is in pain, it can usually be well controlled, and people can be kept very comfortable. The doctors and nurses looking after the dying person will do all they can.

Sometimes restlessness is a sign of being in pain. It’s important to tell the doctors and nurses if the dying person can’t communicate very well and you think they are in pain. The medical staff will want to know so that they can plan the best way to control the pain.

Changes in breathing

When someone is dying, their breathing often changes. It might get noisy and irregular.

There may be times when they stop breathing for a few seconds. This is called Cheyne Stoke (pronounced chain stoke) breathing. They may breathe with their mouth open and use their chest muscles to help them catch a breath.

It can help to raise the head of the bed with pillows or cushions. Just sitting with them, speaking gently and holding their hand can be very reassuring.

A doctor or nurse might suggest giving a small dose of morphine if the person has difficulty breathing, even if they are not otherwise in pain. Morphine can help to make breathing easier.

Noisy breathing

You may hear gurgling or rattling sounds as the dying person takes each breath. This is coming from their chest or the back of their throat.

It happens because there is a build up of mucus and saliva and they don’t have a strong enough cough reflex to cough it up. Raising their head and turning it to the side can help gravity to drain the secretions.

Let the medical team know if your loved one has noisy breathing like this. They can sometimes use certain drugs to help dry up these secretions.

Sometimes a nurse or doctor can suck the fluid out through a thin tube put down into the person’s windpipe, but this is not usually needed.

Hearing the gurgling sounds can be very upsetting, but they don’t usually seem to cause distress to the dying person.

Cold feet, hands, arms and legs

The dying person’s face, hands, arms, feet and legs often become very cool to touch. Their skin might also become pale and look blotchy or mottled.

This happens because there is less blood circulation to these body parts. Keep them warm with blankets, but don’t use an electric blanket as this could become too uncomfortable.

Thick socks can help to keep their feet warm. Don’t overheat the room, as this can make it stuffy. Just keep it at a comfortable temperature.

Confusion and disorientation

You might hear your loved one say things that make no sense. They may not know what day it is or may not seem to know who you are. They could even say things that are totally out of character. For example, they might shout at you or physically push you away. This can be very hurtful and upsetting.

But try to understand that they don’t mean it. They are not aware that they are doing these things. It happens partly because of the chemical changes going on inside their body.

Complete loss of consciousness

At the end of life, the body’s chemical balance completely changes. The dying person then slips into unconsciousness. This is usually right towards the end, maybe only a few hours or days before death.

The person’s breathing becomes irregular and may become noisy. You won’t be able to wake them at all. Their breathing will stay irregular for some time and will stop at some point.

Emotional and spiritual changes

Everyone will feel different emotions when they are dying. A lot depends on:

  • the type of person they are
  • their age
  • how much support they have
  • their religious and spiritual beliefs
  • the experiences they have had in life

Someone dying in their 20s is likely to feel very differently from someone who is 80. And someone leaving behind young children will have different worries from someone whose children are grown up and can take care of themselves.

They might begin to let go as death gets closer and seem more at peace with things. Others might become very anxious, fearful or angry. Some people could appear to withdraw, even from the people they love and care about. But this doesn’t mean that they don’t care anymore.

These events are all very normal and are a natural part of dying.

Unfinished business

Before the final stages of death, the dying person might talk about wanting to complete any unfinished business. This could mean:

  • sorting out any problems with personal relationships – or deciding not to
  • visiting certain places
  • buying gifts for people
  • sorting out personal belongings and giving special things away to family and friends
  • getting their will and financial business in order
  • seeing a religious leader

How you might feel

You are likely to feel some very strong emotions when your relative or friend is dying. You might feel that you want to try and change what is happening. All you can do is give them a lot of support and comfort during this difficult time.

You might need support and help yourself, when someone close to you is dying. It could help to speak to:

  • the doctor or nurses on the ward
  • a religious leader
  • a counsellor
  • close friends and relatives

Try not to worry that you are going to do something wrong. Being with your loved one and letting them know you love and care for them is the most important thing.

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