Caring can be physically and emotionally demanding. If you have been looking after your partner, relative or friend for some time, you may start to feel drained. You may also have a lot of intense emotions including anger or resentment, towards the person you are looking after. If you feel like this, it is important to tell your GP or one of the nurses so they can help you cope.
Looking after yourself
It is important to look after yourself, as well as the person you are caring for. Try and make sure you eat well and do some exercise. Tell your GP that you are caring for someone. Also tell them if you have any concerns about your own health. Try to be honest with yourself, and your GP, if you need some emotional support at this difficult time. Often the hardest thing is admitting to someone that you need help.
You could arrange for someone to help regularly so you can have some time to yourself. This can help, even if it is only for a few hours a week. If there is not a family member or friend who can help, you can contact Carers Trust or Carers UK. Having some help with caring may allow you to spend more time being a family member, partner or friend to your loved one.
When you get time off from caring, try to relax. It is tempting to spend the break clearing up the house or doing the washing, but doing something you enjoy can help to revive your energy. You can also spend time just sitting with and talking to the person you are caring for. This can be very rewarding.
Your relationship with the person you are caring for
It might seem like your relative or friend is losing interest in you and the things that are going on around them. This may be upsetting for you. You may already be missing the way your relationship used to be and all the things you used to do together. This is quite natural and understandable.
It may feel as though they are giving up. But remember, it is often a natural part of dying. They may seem angry or very anxious and it is important to listen to what they are saying and acknowledge their feelings.
Although you may not feel as though you are doing much, just being there and listening can be more helpful than you think.
As your family member or friend gets close to the end of their life, you may need more support from health and social care professionals. You can contact the district nurse, palliative care nurse or social worker. They will review their needs, and arrange extra care services if necessary.
The person you are caring for will probably not want anything to eat or drink at this time. You can keep their mouth and lips moist to help them feel comfortable.
It is important to know some of these things may happen when the person you are caring for is dying:
The person you are caring for may show signs of being in pain.They may be restless, grimacing (screwing up their face) or moving as if they are in distress. They may sweat and have a fast heartbeat and breathing rate. If this happens, the dose of their painkillers may need to be increased. Let their doctor or specialist nurse know so they can advise you about this. They can also check for other causes of these changes, such as an infection.
The person's breathing may change. For example, their breathing may become noisy because of fluid collecting in the breathing passages. Although this can be distressing for relatives and friends, the person will not seem distressed themselves. Their doctor or specialist nurse will be able to give medicines which may help.
The person you are caring for might have symptoms of restlessness, agitation, confusion, shouting or twitching. This is often called terminal restlessness. These symptoms can be caused by pain, constipation, difficulty passing urine, infection, side effects of medicines, or a build-up of waste chemicals (toxins) 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.
As the person you are caring for gets closer to death, they may lose control of their bowel and bladder. This is natural. Talk to the district nurse about this, as they can get you aids to help, such as bed covers and pads. Men can have a sheath put over their penis to collect urine and drain it into a catheter bag. It may be more comfortable for the person to have a tube (catheter) put into the bladder to drain the urine.
Sometimes urine cannot drain out of the bladder, and so the person cannot pass urine. This causes severe abdominal pain, and their tummy (abdomen) will feel very 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 the urine and relieve the pain.
Getting professional support
Do ask for support and help with your caring. There are health and social care professionals who can arrange specialist care and ensure that your relative or friend’s physical needs are met. You can talk to them about being involved in the end of life care planning.
As your relative or friend nears the end of their life, you may find that you need more support and help from professionals to care for them. You can contact their district nurse, specialist nurse or social worker. They will reassess their needs and arrange extra care services, if necessary.
Religious and spiritual support
There may also be people, such as religious leaders, who can help you provide emotional comfort. Your relative or friend may want particular practices carried out, or prayers read, as they are dying.
It is important to do whatever you both feel is right and most helpful. Keep a note of anyone you need to contact in this situation.
Contacting support services
Make sure you have phone numbers for the:
- district nurse
- specialist nurse
- out-of-hours services (to use in the evening, at night and at weekends).
If you are worried that the person you are caring for seems distressed or has new or uncomfortable symptoms, contact one of them for advice and support.
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.
End of life care plan
You may hear the doctors and nurses talk about an end of life care plan for the person you are caring for. This explains the care your family member or friend will need as they approach the end of their life. It will help to make sure that their needs for food, drink, symptom control, and emotional, spiritual and social support, are met.
The doctors and nurses will involve you in decisions about your family member or friend’s treatment and end of life care plan. They will also give you emotional and practical support.
If you would like more information about your family member or friend’s end of life care plan, speak to one of their doctors or nurses.
You can help keep your family member 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 speak to them and 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 not much needs to be done for their care, and you can just sit with them and be close to them.
It is ok to contact your family member or friend’s GP or specialist nurse to tell them what is happening. Ask them for help and advice if you need it.
Dry mouth and sickness
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 teach you how to help with mouth care. 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 possibly moist. Sometimes the skin changes colour and becomes slightly more blue, grey or white. Their skin may also be very sensitive to touch. So if you move them, 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. Their breathing may become irregular. At times there may be longer gaps between breaths and at other times their breathing might be quicker. It may also become very noisy. This is due to a build-up of fluid in their air passages when they are lying flat. This may be upsetting for you and any other people around. 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 to help reduce the build-up of fluid.
The person you are caring for may drift in and out of consciousness. This means there may be times when they do not seem to recognise you or other people around them. You may find this distressing. They may also talk to people they knew in the past or who died long ago, probably because they are thinking of these people. If they seem restless or agitated, a nurse can give them sedatives by injection or through a syringe pump to help.
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 each breath. Their tummy (abdominal) muscles may take over control of the breathing from the chest muscles, so that their tummy rises and falls with each breath.
Finally, they will stop breathing altogether. This may seem to 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. Some people feel they can sense when the person has died.
In some cultures, there is a belief that the person’s mind or soul (consciousness) stays around the body for some time after death. Other people feel that their consciousness moves on quickly to another place. Some people believe that life just ends, and nothing is left of the person’s mind or consciousness.