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, spiritual and cultural beliefs and values influencing care. Record of significant discussions with child or young person and their parent carers. Agreed treatment plans for end of life care and objectives. 24 hour access to pain and symptom control – you should know who to contact and how to contact them… Here’s what you should expect as a parent carer in terms of providing care to your child and ensuring you and your family have the support you need for providing quality family life. Child and family assessment Your child should receive a multi-disciplinary and multi-agency assessment as soon… and cultural needs. Make sure you are given a copy of the assessment which is provided in a straightforward and jargon-free way. Child and family care plan This assessment should lead to a written care plan with clear outcomes that enable you, your child and other family members to have the best family life…

for their future and is involved in assessments and in developing a comprehensive plan which reflects their wishes. Every young person has both an end of life care plan and plan for ongoing care and support in adult services. Children’s and adult services will work together to ensure smooth transition… With advances in medicines and technology more and more children with life limiting or life threatening conditions are now living into adulthood. Transition into adulthood is not a one off event but is a process that takes place during your child’s teenage years and should start at around 14… will be especially important for a young person with complex and life threatening health conditions and may need to include hospital and hospice care teams. For further information go to together for short live . Things to think about From the age of 14 years, healthcare professionals should begin…

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 do I do…

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 to talk…. 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 people talk about how…

All carers need to recharge their batteries including young people! It is so important when caring for a person in your family approaching the end of life or if coping with bereavement that you look after yourself too. It is important not to feel guilty about it. Do something you love So what helps you feel less stressed or anxious? It’s important to pick something you love doing. Here are some ideas to get you thinking: Exercising and sports, for example, football, cycling, or running Drawing or painting, for example, you could paint a picture to show how you feel Playing or listening to music Talking to friends Write your feelings down by filling out a daily diary Make a memory jar by writing down a special memory about the person, folding it up, and putting it in the jar Reading a book or watching a TV show or film Walking the dog or taking a trek in the countryside Having a soak…

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 and handle…

, 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 to take…. 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 every day…

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, medicine…

to religious music may bring comfort. An outline of spiritual and religious practices (PDF) relating to end of life care and different faiths. Things to think about Talk to the person about the importance of your relationship with them. If caring for a parent you may want to share how they have influenced the course of your life. If you are a grandchild you can let your grandparent know how much they have meant to you. If you are a friend you can talk about how you have valued years of support and friendship. Family and friends who can’t be present could send a recording of what they would like… The person you care for may have spiritual needs that are just as important as their physical needs. These may not be religious concerns as such but might include finding meaning in one’s life and ending disagreements with others. The person might find peace by resolving unsettled issues…

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 by build-up of toxins…