Please be aware that this content has been written for carers who are preparing for end of life care and death of a loved one. You can find all of our tailored articles for other caring situations here.
Due to the nature of these articles, there are references to death and dying which can be upsetting. We encourage you to read these articles with your wellbeing in mind and take a break if you need to.
Caring for someone who is at the end of their life can be an incredibly emotional experience. Alongside looking after someone’s physical wellbeing, caring for someone at the end of their life can also include offering moments of comfort, providing reassurance about what will happen after they have died and guiding the person you care for through this phase of their life with as much dignity and respect as possible. In this introduction, we will explore what you might consider if the person you are caring for is reaching the end of their life, share some useful resources and offer practical suggestions to help you navigate this difficult time.
End of life care is the treatment and support provided to someone to ensure that they are as comfortable as possible during their final stage of life. Whilst it does include the care provided in their final moments, it can also include the days, weeks and months leading up to their passing. A GP or healthcare professional will suggest end of life care for those who are given a terminal diagnosis or are not well enough for further treatment. End of their life can be given at home, or in a residential home, hospice or hospital.
The term ‘palliative care’ can be applied to anyone with a chronic illness but here we’re using it to talk about the support the person you are caring for is receiving at the end of their life. Palliative care focuses on ensuring that someone is able to go through the dying process with dignity and respect. It includes the physical, practical, emotional and spiritual needs of the person who is dying, aiming to reduce any suffering and enhance their comfort and their quality of life.
When someone starts to transition into end of life care, an important first step is often to tell their friends and family. This might be something which, as their carer, you do with or for the person you care for, when they are ready.
Telling friends and family as early as possible allows them to come to terms with the news and prepare themselves for what comes next. Friends and family may also become part of their support network, helping to ensure their needs and wishes are met as far as possible. Our article on Managing relationships when caring for someone at the end of life might be a useful resource here.
When someone is receiving end of life care, it can be helpful to talk about death and the dying process. This can allow you and the person you care for to speak openly about what is going to happen and final wishes.
Talking to someone about death can feel uncomfortable, especially if you are discussing things that you haven’t talked about before but talking about it allows you to share this experience together and can offer peace of mind that you are respecting their wishes as far as possible.
Advanced Care Planning and decision making
Talking about Advance Care Planning (ACP) with the person you are caring for and their healthcare team, and then having a clear plan in place, can bring peace of mind that their wishes, beliefs and preferences will be respected as much as possible, for as long as possible. It means that the palliative care they receive and any medical interventions that might be suggested will align with their values.
As their carer, you may be responsible for practical tasks like managing their finances and for making arrangements after their death, and so knowing what the person you are caring for wants and how they would like things to be left when they die is important. Open conversations will ensure that the wishes of the person you are caring for are honoured and that you and your friends and family are adequately prepared for the future.
As well as taking responsibility for these practical tasks, end of life care means looking after someone’s physical needs too. If the person you are caring for wishes to die at home, you may be involved in helping them to feel as comfortable as possible. This may be through organising and receiving visits from their health team, supporting with personal care, and overseeing pain management in partnership with their medical team. For more information on caring for someone who wants to die at home, you can read our article on it here - link to article on dying at home.
As the condition of the person you care for changes, communication between you and the medical team will be key. You might find it helpful to keep a diary to record any changes you notice regarding movement, eating, sleeping, and the behaviour and personality of the person you are caring for. This will help the medical professionals to offer the best interventions as quickly as possible.
End of life care also means offering emotional support to the person you are caring for. People who are dying may need to express their fears and worries about dying and death or share certain feelings as they look back on their life. Listening to the person you are caring for without judgement can provide great relief for them. You may also be arranging visits for the person you care for from friends and family, serving meals, or providing opportunities for their favourite activities so that they can enjoy themselves as they progress through this phase of their life.
As a carer for someone at the end of their life, your role will likely continue for a short while after their death. During this difficult time, there are practical steps and procedures you may be responsible for, such as contacting your doctor, registering their death, and informing different agencies and companies.
Caring for someone is already physically and emotionally demanding, and caring for someone at the end of their life will naturally bring extra challenges for you to face. Making sure that you are feeling supported and cared for yourself, with a strong support network in place, is vital to your own health and wellbeing and will mean you are more able to support the person you are caring for.
It’s important to remember that you don’t have to go through this on your own. Other friends and family members may want to support you and might not know how, or what they could help with.
You could suggest they help with certain practical tasks, like looking after the garden or cleaning the bathroom, maybe cooking a meal for you once a week or being on a shopping rota. Asking someone to be responsible for sharing regular updates with friends and family via a WhatsApp group could be a great support to you too. Community nurses are there to help with some of the physical care, and your GP, social worker or your palliative team will be able to signpost you to other useful services and support you can access at home.
As a carer of someone at the end of their life, you may also benefit from emotional support, so making sure you reach out regularly to friends and family to talk and share what’s going on will be beneficial. Your GP will also be able to help, signposting you to peer support groups (either online or in-person) and counselling services that are available.
If you are caring for someone at the end of their life, it can be important to consider breaks and some regular respite or time off from your caring role. Asking people in your support network to step in for an hour or two each week so you can go out of the house for a change of scene and to do something you enjoy will make all the difference to how you feel.
Lots of carers say they felt guilty taking time for themselves when the person they were caring for was at the end of their life, but realised that when they prioritised this respite time, they often returned feeling stronger and more refreshed. This then meant they were more able to be fully present with the person they were caring for.
Where end of life care may take place
Where the person you are caring for chooses to die, will depend on the wishes of the person, if home is suitable and what their needs are. Along with considering the caring role. If you are supporting someone to die at home, we have a guide to support with this here.
Sometimes the person you are caring for may need to move from home into residential hospice care (embed article link) near the end of their life. For many carers, this is an incredibly emotive decision, giving rise to difficult emotions such as guilt. Carers tell us that it can help to remember that you are simply making sure the person you are caring for receives the best possible care at every stage.
Difficult emotions and guilt
Difficult emotions can arise at any time, and some carers have shared with us that looking back, they were surprised that they felt grief during this period, before the person they were caring for had died. This ‘anticipatory’ or ‘pre-emptive grief’ is very natural, and our articles on Grief and Managing difficult emotions may be helpful resources as you navigate this challenging time.
We are here to support you at every stage of your caring journey, including caring for someone at the end of their life and beyond. Through these articles, we hope you are given both practical and emotional support and able to share them with friends and family who may be supporting you as well.