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Are you seeking information and further guidance on how to make decisions together about end of life care? Or perhaps you have recently lost a loved one and need help with immediate practical, legal, and financial issues as well as coping with grief. Whatever the situation, time will be precious to you. There is already a wealth of information for carers about end of life care, both on the internet and in leaflet form; however, it is sometimes difficult and time-consuming to find and work through. You and the person you care for will come across a lot of confusing terms and language when first receiving a diagnosis. In particular, there is a lot of confusion about what is palliative care and what is end of life care. A life-limiting illness is an illness for which there is no cure, for example, motor neurone disease, dementia, or advanced cancer. Sometimes this is referred…

be nearing the end of their life, they may be given NHS continuing healthcare on a fast-track basis. See paying for care for more information. When thinking with the person you care about where to receive end of life care go to Choosing where to be cared for . Hospice care You may think that a hospice can only provide care when someone is about to die. This is a myth; as hospices can provide care for anyone with a terminal illness, sometimes from the time they receive a terminal diagnosis. In other words, hospices provide palliative care including end of life care. The person you care… or they may need to go into hospital in an emergency. Decisions about their end of life care may be made by staff in Accident and Emergency or by an assessment unit or ward. The hospital may have a palliative care unit or team where staff will help to control symptoms and provide emotional support…

Funding end of life care can be expensive, not just for the person you care for but also for you as the carer. The person you care for may have had to give up work because they are too unwell and/or you may have had to give up work to provide the care they need. There are a range of sources… organisations and local charities that could provide help. NHS funding The NHS may fund nursing care costs in certain circumstances for the person you care for as they approach end of life. There are two different types of funding: NHS Continuing Healthcare : under this scheme, the NHS pays for care home…. As well as many national and local charities providing information and advice on end of life care, some can also provide free support, practical help such as a sitting service, transport to medical appointments, and one-off grants. Hospices can also provide free care for those nearing end of life…

and Handling service provides safe solutions for carers who carry out moving and handling as part of their role. This support is free. Our mental health is also very important when providing end of life care. So talking about your feelings and not bottling everything up is vital. You may have a very…

If you are under the age of 18 and providing care to a terminally ill relative then you are a ‘young carer’. If you are between the age of 18 and 25 then you are a ‘young adult carer’. Both young carers and adult young carers take on practical and emotional caring responsibilities that would normally be expected of an adult. You are very likely to have a number of worries as a young carer or young adult carer looking after a family member approaching end of life, which are perfectly normal and it is important that you are able to talk to someone about these: What has caused the illness, was it my fault and can I catch it? Why has it happened to us? What can I do to make him/her feel more able to deal with the illness? How will the illness get worse and when will he/she die? Who will look after me? If I tell anyone will I go into care? What do we do for money? What…

at home who is approaching the end of life then they will be able to be more understanding with any school pressures and try to help. You may find it easier for your parents or other family members to tell the school. It is important the school know as they may have: A school counsellor for you… and chatrooms. In particular, consider contacting the local charity Jigsaw which specialises in giving support to young people caring for a person who is approaching end of life or who are grieving for a relative. If you have just lost a parent, so you don’t feel alone, listen to other young…

Adaptations can range in scale and cost. It might be as small as fixing an intercom or as large as an extension to the home. Your local social care team may give financial support for minor adaptations. You may also be entitled to financial help with more major adaptations via a Disabled Facilities Grant. Go to Funding end of life care for more information. Things to think about Make sure the equipment works not just for the person but also for you. Carers UK has a room by room guide on types of equipment that may or may not help. Any decisions about equipment and adaptations also need to take into account the risks to your own physical wellbeing, particularly where moving and handling of the person is involved. The carers moving and handling team are able to give you details on how to access a back care assessment by a back care advisor as well as training on how to move…

can help , including a large print and easy read guide. When the person is reaching the end of their life, doctors and nurses will advise on how best to minimise disturbance and distress and if some or many of the medications should be stopped as they will no longer be of benefit or are difficult… under control. Attached to the syringe is a long piece of plastic tubing with a small needle at the end, which is inserted under the person’s skin and secured by a dressing. The medication is then delivered very slowly into the arm or other suitable part of the body. A nurse will check the driver…

Understandably the dying person may be mentally and emotionally distressed especially when they are cognitively alert near the end of life. They may also have very specific fears and concerns, for example, worrying about being alone at the end or a fear of the unknown and leaving their loved ones behind. This fear can be made worse when family and friends do not know how to help or what to say and may even stop visiting adding to the person’s sense of isolation. Sometimes doctors feel a sense of helplessness as they cannot cure the person and can seem to avoid the dying person. Things to think about If the person is highly anxious and depressed it is important to treat the emotional pain and suffering. Talk to their doctor about what can be offered. You might want to contact a counsellor, ideally one familiar with end-of-life issues. If the depression or anxiety is severe…

The signs of death approaching will be different for each person. It is difficult to predict what may happen at the end of life, how long the final stage of dying will last, or when death will actually happen. Death may come quickly due to an unexpected event or the final dying process may happen slowly with the person you care for lingering. The following signs are examples of what may happen to the person you care for and who is dying. Some may or may not happen, but it can be useful to know about them. Body changes very weak and unable to get out of bed needing help with all personal care loss of interest in food and may have little food or fluid intake for days the mouth becomes very dry and/or mucus collects at the back of the mouth trouble taking medication, swallowing tablets sudden movements of muscles, twitching or jerking (terminal restlessness caused…