If the person you care for is dying
Dying is a natural process. But few people have experience of looking after someone at the end of their life. If you are caring for a loved one, you may be anxious about looking after them at home. However, with the right help, it can be a rewarding experience. It can also bring you closer to the person who is dying.
This page is about caring for someone in the last few weeks and days of life. It also covers what happens after they have died. You may also find our other information about end of life helpful.
Caring can be physically and emotionally demanding. If you have been looking after your partner, family member or friend for some time, you may start to feel very tired.
As a carer, you may face extra challenges getting support when the person is at the end of life. Whatever your background and identity, it is important to get support and look after yourself, as well as the person you are caring for.
Try and make sure you eat well and do some exercise. If you have any concerns about your own health, visit your GP. Tell them you are caring for someone.
You may also have some strong emotions. You may feel angry, or resent the person you are caring for. Talk to your GP about this too. They can discuss getting some support for you. It can be hard to admit that you might need help. But getting help can make caring a lot easier for you.
There are organisations that can provide information and support to you as a carer.
- There may be a local carers’ organisation in your area
- or you could contact an organisation such as Carers Trust and Carers UK
- the LGBT Foundation and Carers UK have information for people who are LGBTQ+
- you can also search for local carers’ organisations at carers.org
- in many Boots pharmacies, Macmillan Information Pharmacists also offer free specialist advice and support about end-of-life care. This includes information and support about accessing medicines. You can check live stock availability on the Boots website, or Download the list of pharmacies that offer the Palliative Care Service.
It can also help to make sure you have some time to yourself. You could arrange for someone to help you regularly, even if it is only for a few hours a week.
When you get time off from caring, try to relax. Doing something you enjoy can help give you more energy and feel less stressed. You could meet someone for coffee or do something just for you, such as watching a film or getting your hair done. Try not to feel guilty – looking after yourself will help you care for you loved one better.
Macmillan is also here to support you. If you need someone to talk to, we're here to listen. You can:
- Call the Macmillan Support Line for free on 0808 808 00 00.
- Chat to our information and support specialists online.
- Visit our carers forum to talk to other carers online.
Your relationship with the person you are caring for
The person you are caring for may feel many different emotions during this time. They may feel anxious, panicky, angry, resentful, sad and depressed. They may become quieter and want to communicate less (become withdrawn). They might also seem to lose interest in their surroundings.
It is natural for them to have some or all of these feelings. But it can be upsetting for you to see these changes in them. You may already miss the way your relationship used to be and the things you used to do together. This is understandable.
Sometimes, it may feel as though the person is giving up. But this is often part of the natural process of dying. If they seem upset, angry or afraid, try to listen to what they are saying and acknowledge their feelings. Just being there and listening is helpful and comforting.
If you are concerned about how they are expressing their emotions, talk to their GP or another health professional.
If caring becomes difficult
Caring for someone at home can become difficult for many reasons. As time goes on, you may feel they would be better looked after in a hospice or care home. This may be because you do not have the nursing or medical skills to look after them. Or you may feel that caring for them has become very difficult emotionally or physically.
Talk to the district nurse or GP if you are finding caring difficult. They may be able to provide extra support. Or they can give you advice about where your loved one could be cared for.
Sometimes the person you are caring for may need to move from home near the end of their life. It is important not to feel guilty, or feel that you have failed. Instead, remember that you are making sure they get the best possible care.
The person you are caring for may have different symptoms during this time. There are lots of ways to help them feel as comfortable as possible. If you are worried about any symptoms, tell the healthcare professionals involved in the person’s care. They can advise you about the best way to manage the symptoms.
As time goes on, the person may not want to eat much. This is quite natural, as the body does not need food towards the end of life. This can be hard for you, especially if you have worked hard to prepare food they might like. But it is important not to try to force them to eat. You may want to offer them drinks they like instead.
As your family member, partner or friend gets close to the end of their life, they will probably not want anything to eat or drink. You can keep their mouth and lips moist to help them feel comfortable.
The person you are caring for may have some of the following symptoms and need help to manage these.
If they seem distressed or have new or uncomfortable symptoms, tell a member of the healthcare team. Make sure you have phone numbers for the:
- district nurse
- specialist or palliative care nurse
- out-of-hours services (to use in the evening, at night and at weekends).
Keep the numbers in a safe place. Make sure you know who to contact first. This will help you feel more confident if you need to contact anyone.
The person you are caring for may show signs of being in pain. They may:
- be restless
- screw up their face (grimace)
- move as if they are in pain
- have a fast heartbeat and breathing rate.
If this happens, tell the doctor or specialist nurse. They may need to increase the dose or change their painkillers. There may be another cause for these symptoms, such as an infection. The doctor or specialist nurse can advise you about the best way to help. They can also prescribe medicines if needed.
The person’s breathing may change. It may become irregular. Or it may become noisy because of fluid in the breathing passages. This can be upsetting for you, but the person will not usually seem distressed. The doctor or specialist nurse can give medicines which may help.
The person you are caring for might be restless. They may seem agitated or confused, and they might call out. Their body might twitch. This is called terminal restlessness or terminal agitation. These symptoms can be caused by different things. These include:
- difficulty passing urine (peeing)
- side effects of medicines
- a build-up of waste chemicals in the blood.
Some people become restless because of emotional distress, a fear of dying or a fear of losing control. They may get comfort from a close friend or family member, a trusted health professional or a spiritual or religious leader.
The doctor or specialist nurse will try to treat the cause of the restlessness. But sometimes this does not help, or they may not know the cause. In these cases, the symptoms can often be controlled with medicines such as sedatives. These can be given by injection or through a syringe pump.
As the person you are caring for gets closer to death, it is natural for them to lose control of their bowel and bladder. This can be distressing for both you and them. A district nurse can provide aids to help manage this, including:
- disposable bed pads
- pads to wear inside, or instead of, underwear
- a tube (catheter) that is put into the bladder and drains urine into a bag
- a urinary sheath that fits over the penis like a condom – it collects urine and drains it into a bag.
Sometimes the person cannot pass urine. They may have a lot of abdominal pain, and their tummy (abdomen) might feel hard and bloated. If this happens, contact your doctor or nurse straight away and ask them to come urgently. They can put a catheter into the bladder to drain urine and relieve the pain.
Religious and spiritual support
The person you are caring for may want particular practices to be done, or prayers read, as they are dying. It is important to do whatever you both feel is right and most helpful. It may help to keep a note of anyone you need to contact in this situation.
End of life care plan
You may hear the doctors and nurses talk about an end of life care plan. This explains the care your family member, partner or friend will need as they approach the end of their life. It will help make sure that their needs are met, including:
- food and drink
- symptom control
- emotional, spiritual and social support.
The doctors and nurses will involve you in any decisions and plans. They will also give you emotional and practical support.
If you would like more information about this, speak to one of the person’s doctors or nurses.
You can help keep your family member, partner or friend comfortable as they near death. Even if they are unable to respond, they may still be able to hear you and know you are there.
You can still talk to them. Tell them what you are doing, especially if you are giving them medicines or moving them. This may feel strange if they cannot respond, but it can be comforting for both of you.
You may need to move them regularly to keep them comfortable. But there may be times when you do not need to do as much for their care. During this time, you can sit with them and be close to them.
If you have any concerns, contact the person’s GP or a member of their healthcare team for advice.
The person you are caring for will not usually feel thirsty at this stage. But their mouth may be dry and need to be moistened. The nurses can show you how to look after their mouth. If your family member or friend feels sick, a nurse can give them anti-sickness medicines (anti‑emetics) by an injection or a syringe pump.
Skin and sensation changes
In the last few hours, the person’s hands, feet and skin may feel very cold and sometimes moist. Their skin may change colour and become slightly more blue, grey or pale. Their skin may also be very sensitive to touch. If you move the person, be very gentle and tell them what you are doing.
A few layers of light, warm clothing and bedding can help to keep them at a comfortable temperature.
As the person gets closer to death, their breathing pattern will probably change. At times there may be longer gaps between breaths. At other times, their breathing might be quicker. It may also become very noisy. This is due to a build-up of fluid in the air passages. This can be upsetting for you, but it is not usually distressing for the person who is dying.
If fluid does build up in the air passages, changing the person’s position may help. Or a nurse can give them drugs by injection or through a syringe pump. This can help reduce the build-up of fluid.
The person you are caring for may drift in and out of consciousness. There may be times when they do not seem to recognise you or other people. They may also talk to people they knew in the past or who died long ago. This may be because they are thinking of these people.
Final moments of life
For most people, the final moments of life are very peaceful. The person’s breathing may become even slower and more irregular, with very long pauses between breaths. Their tummy (abdominal) muscles may take over control of breathing from the chest muscles, so that their tummy rises and falls with each breath.
Finally, they will stop breathing altogether. This can take a long time for some people. For others, it will only be a few minutes. Sometimes it can be difficult to know the exact moment of death. Often, the person’s body will relax completely, and they may look very peaceful. You may feel that you can sense when the person has died.
You may believe that the person’s mind or soul (consciousness) stays around the body for some time after death. Or you might feel that their consciousness moves on quickly to another place. You may believe that life just ends, and nothing is left of the person’s mind or consciousness. Everyone feels differently about what happens to someone when they die.
Below is a sample of the sources used in our advanced cancer information. If you would like more information about the sources we use, please contact us at firstname.lastname@example.org
Health Improvement Scotland/ NHS Scotland. Scottish Palliative Care Guidelines. Available from www.palliativecareguidelines.scot.nhs.uk/ [accessed Nov 2021].
NICE. Care of dying adults in the last days of life. NICE guideline NG31 [Internet]. 2015. Available from www.nice.org.uk/guidance/NG31 [accessed Nov 2021].
NICE. End of life care for adults: service delivery. NICE guideline NG142 [Internet]. 2019. Available from www.nice.org.uk/guidance/ng142 [accessed Nov 2021].
NICE. Improving supportive and palliative care for adults with cancer. Cancer service guideline CSG4 [Internet]. 2004. Available from www.nice.org.uk/guidance/csg4 [accessed Nov 2021].
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Dr Viv Lucas, Consultant in Palliative Medicine.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.
The language we use
We want everyone affected by cancer to feel our information is written for them.
We want our information to be as clear as possible. To do this, we try to:
- use plain English
- explain medical words
- use short sentences
- use illustrations to explain text
- structure the information clearly
- make sure important points are clear.
We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected.
You can read more about how we produce our information here.
How we can help
Chat online anonymously to others who understand what you are going through. Our community is available 24/7 and has dedicated forums where you can get advice and ask our experts.