Some of the things that happen at this time may seem strange or frightening, especially if you are not expecting them, but this information aims to help you understand what is happening and reassure you and your carer or family that many of these changes are natural and normal at the end of life.
Your carer may find it helpful to read this section as well, and discuss it with you. If you would like support as you read this section, or if you would like to discuss any of the issues in more detail, do ask one of the healthcare professionals looking after you.
As you become more frail, you will need increased support from your carer and family. At the same time, giving up your independence isn’t easy and it is important for the people around you to recognise that you will still have preferences about how you are cared for.
You will still want to make decisions about your care, even what may seem like small decisions to others. It is important for the carer to listen to what you want because needs vary from patient to patient.
Of course there will be many changes to life when you are very ill, but this doesn’t mean you can’t enjoy those aspects of ‘normal’ life which are still possible. If you previously enjoyed an alcoholic drink you may still be able to do so – check with your District Nurse or GP.
And if you still want children or pets to be around, there is no need to exclude them from your room (though you may also want to schedule ‘quiet times’ to rest).
If you and your carer, family and friends like to show physical affection through touch, hugging etc, there is no reason not to continue as long as it’s not physically uncomfortable for you.
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Withdrawal
You may start withdrawing from the world and your surroundings gradually. You may become very weak and drowsy as your illness progresses, and you are likely to get weaker and weaker day by day. You may prefer to stay in bed and rest. You will spend more time sleeping, you will be harder to rouse and will often be drowsy when awake.
This apparent lack of interest in your surroundings is part of a natural process. It does not mean that you are rejecting or losing interest in your loved ones. Your carer and family may find it rewarding if some of the time they spend with you is when you are least drowsy and most conscious, but simply being together at any time can be a great comfort to both of you.
Even if you are drowsy or asleep, you may still hear what’s going on around you, and can take comfort from hearing the normal sounds of life around you or hearing someone talking to you. Do encourage your carer and family to continue to live normally around you, even if you are asleep.
Even if you are awake, you may be too weak to talk. However, you may still be able to let the other person know whether you want them to talk to you or just sit quietly with you.
Being cared for in this way can help you to feel comforted and loved.
Eventually you may lapse into unconsciousness and people may not be able to rouse you at all. You may remain in this state for a surprisingly long time (in extreme cases many days) although for some people it is shorter. However, in some cases this will not happen and some patients will die suddenly without warning.
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Food and drink
You may stop eating and may want only sips of liquid. This can be hard to accept, even when the carer knows you are dying, because it is a physical sign that you are not going to get better.
The carer may be able to take some practical steps to help you. For instance, if you start to find it difficult to swallow, or are having problems with nausea, the District Nurse should be told (but also please see the Other care and support: nutrition section).
If this is causing problems with taking your medication another way of giving drugs can be used. The most common way is with a syringe driver, which gives a carefully measured dose of drugs over 24 hours, directly under your skin.
It may just be that you need more help than before. As weakness develops, the effort of eating and drinking may simply be too much and you may appreciate help. If the carer is helping you to eat, giving you a few moments to rest after you have finished each mouthful can be helpful.
Eventually there will come a time when you do not want or need food and drink. This can be very distressing for carers as food and drink are closely associated with nurturing. This is not a rejection of care - simply a natural step in the progression of the illness.
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Moving you in bed near the end of life
Sometimes it is hard to balance your comfort and the need to move you to help prevent pressure sores. If the District Nurse has provided a special pressure-relieving mattress, it may not be necessary to continue to move you in the last few hours of life.
If you become uncomfortable due to being in one position for an extended period, the carer may be able to ease this by gently moving and massaging your arms and legs – it can help if they explain to you what they are doing and why.
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Changes in breathing
People who suffer from breathlessness are often concerned that they will die fighting for their breath. Yet towards the end of life, as the body becomes less active, the demand for oxygen is actually reduced to a minimum.
This may be comforting if you have had breathing problems, and carers often remark that when a loved one is dying their breathing is easier than it has been for a long time.
Breathing difficulties can be made worse by feelings of anxiety. But the knowledge that someone is close at hand is not only reassuring; it can be a real help in preventing breathlessness caused by anxiety.
Occasionally in the last hours of life there can be a noisy rattle to the breathing. This is due to a build up of mucus in the chest, which you are no longer able to cough up. Medication may be used to reduce this and changes of position may also help.
These measures may have limited success, but while this noisy breathing is upsetting to carers it doesn’t appear to distress the patient.
If you are breathing through your mouth, your lips and mouth will become dry. Moistening your mouth with a damp sponge and applying lip salve will give comfort. Sometimes it can be refreshing for you if the carer lets very small chips of ice melt in your mouth and on your lips.
When death is very close (within minutes or hours), your breathing pattern may change again, with breaths becoming more shallow and irregular (at this stage, you will probably not be aware of this). Sometimes there are long pauses between breaths, or the abdominal muscles (tummy) will take over the work – the abdomen rises and falls instead of the chest. Your breathing may appear laboured but this seems to be more distressing to the carer than it is to the patient. Gradually there will be longer pauses between each breath until the last one is taken.
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Other physical and psychological changes
There may be a decrease in the amount of urine you produce, and it may also be darker in colour and more concentrated. You may lose control over your bladder and become incontinent. If this happens the District Nurse will give your carer advice on how to manage this and will provide them with pads and incontinence sheets.
You may become restless and agitated or confused and may pull at the bedclothes. Sometimes if someone just sits with you, holding your hand and speaking gently, this can have a calming effect. However, the carer should also check whether you are too hot or too cold.
They can also check whether you have a full bladder by feeling your tummy to see if it is hard and distended (swollen).
If you continue to be restless and agitated, the carer should tell the District Nurse. It may be possible to give you another drug which will make you feel more comfortable, or it may be necessary to consider using a urinary catheter.
You may become confused about where you are or what time it is, and may not recognise people you know. Reminders from the people around you as to what day it is, what time it is, and who is in the room can be comforting. The lights should be dim rather than bright, but still bright enough for you to see faces.
Soft music may be calming. You may see or hear people and things which are not really there. This may not necessarily be frightening for you and sometimes may even be comforting. (For instance, you may think you see someone who has died – while one patient might be upset, another might welcome ‘seeing’ this person again.)
Your carer and family/visitors should be discouraged from saying that what you see isn’t real, or from telling you that you are seeing things.
However, if hallucinations seem to increase in severity or seem to be distressing for you, your carer should tell the District Nurse. It may be necessary to review your medication and consider a different dose or drug.
Your hearing and vision may deteriorate, but people should assume that you can hear, since hearing is thought to be the last of the senses to diminish. Telling you what’s happening around you, and continuing to talk to you, can be a comfort for the carer as well as for you.
Your arms and legs may become cool to the touch and bluish. The carer may notice that the underside of your body is much darker. These symptoms are the result of blood circulation slowing down and do not necessarily mean that you are too cold.
Fevers are also common. On the other hand, the skin can become pale and moist and slightly cool prior to death. Most people do not wake up, but die peacefully, comfortably and quietly.
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