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.
Caring for someone who is at the end of their life is a unique caring role, tailored to the needs and wishes of the person you care for. As part of caring for someone who is end of life, there will be a number of decisions they make which affect the caring role, such as where they want to spend their final moments and pass way. This article shares information on caring for someone who wants to die at home.
Before exploring ways to support someone to die at home, it is important to acknowledge that this isn’t always the best choice for everyone and there are times when transitioning into a residential care home or hospice is in their best interest, even if it goes against their wishes.
Whilst it can be a great comfort for someone to die at home, and possibly one of their wishes, making sure this is also the right decision for you as their carer is equally as important. For information about residential care or supporting someone through the transition into a care home, you can read our article on it here.
When someone is nearing the end of their life, they will usually need support to meet their physical, mental and emotional needs as well as practical tasks. Caring for someone who is at the end of their life as home can be an intense caring role at times but there is support available to support you both. It may be that there will be medical professionals visiting at home or hospice at home support.
Supporting with practical needs
End of life care focuses primarily on making sure the person you are caring for feels as comfortable as possible and is able to progress through the dying process with dignity and respect. The GP will usually be your main point of contact and will be able to give you some idea as to how their condition will progress. Your GP may recommend a Needs assessment and/or a Carers Assessment to be carried out, this will help to ensure the right support is put into place. This might include hospice care at home or visits from district nurses, Occupational Therapy (OT), or paid carers. You might also have a social worker if you or the person you care for has previously had a needs assessment through social services who can help organise non-medical support like having meals delivered, getting your home adapted and setting up respite care for you when you need it.
Having this support in place can be particularly important if the person you are caring for is or becomes bedbound as there are specific care needs which arise when someone is unable to move themselves like turning, washing and toileting. You can find more information on supporting someone who is bedbound here.
When someone you care for wants to die at home, you may be able to book appointments with services like the optician and dentist who can come to your house: How to access home appointments and services when the person you care for cannot get out and about.
Involving family and friends
To help keep family and friends updated, you might keep friends and family informed with regular updates using a WhatsApp group or a closed social media page. This can also be a great way to coordinate caring duties, as well as preventing you from having to repeat the same information to different people, which can be tiring for you.
When someone is at the end of their life, it can be helpful to ask family and friends to help with practical tasks such as gardening, cleaning, shopping or collecting medicines. If the person you are caring for cannot be left alone, you might also ask friends and family to come and visit so that you are able to have some important time to rest and have time off to carry out personal tasks. Involving family and friends can help carers to feel less alone in their caring role too.
Supporting someone at the end of life with their physical needs
If you are caring for someone at the end of their life, you will of course want them to feel as physically comfortable as possible. Whilst everyone's situation is unique, there are some symptoms that can be familiar to those at the end of life.
As the physical body naturally begins to slow down, everyday tasks demand more energy meaning that fatigue, or extreme tiredness, can be a very common experience. Someone at the end of life will naturally want to sleep more and appear less interested in what is going on around them. This is very normal. Allowing them to sleep is important, and whilst they may appear to be resting or not engaged in what's going on, it’s likely they can still hear you and so continuing to communicate with them in a reassuring, soothing way will be very supportive for them.
Their health team will be part of helping you assess how to make this time easier for the person you are caring for, and it might involve using equipment like a commode or a seat to sit on in the shower or offering bed baths instead of having to walk to the bathroom.
There are many reasons, including certain medical conditions or the side effects of medication, why those at the end of life might experience feeling sick, changes to their appetite or general digestive discomfort. If you are caring for someone at home and they are experiencing this, letting your GP or health team know can make all the difference as there are medicines and treatments available that can help bring relief.
You might also find their eating and drinking habits change. For example, they might eat less or have more but smaller meals throughout the day. If the person you are caring for is not drinking much their mouth can become dry and sore. If this happens, it can help to gently moistening their mouth with a sponge, applying lip balm, using a straw, and offering ice chips to suck on which will help them to feel more comfortable.
If you have any concerns about their nutrition, you can speak to their health team to ensure that their basic nutritional needs are being met.
As someone reaches the end of their life, they need less oxygen, their breathing slows down and there might be long spaces between their breaths. Even though it is a natural part of the process, this can be unsettling for the person you are caring for, and for you. If the person you are caring for is having difficulty breathing (your GP might call it ‘dyspnoea’), your health team will be able to help. You can also support the person you are caring for by raising the head of their bed or changing their position, as well as opening a window or having a fan in the room to encourage air to circulate.
In the last hours of their life, the person you are caring for may also go between shallow and deep breaths, or there might be a rattling sound due to fluid building up in their chest or throat. Although this may be upsetting to hear or see, it can be reassuring to know that this is not painful for them. You can always help to ease the sound a little by elevating their head or turning them gently onto their side if that feels right. Simply sitting by their side, holding their hand and reassuring them in a calm, soothing tone can go a long way to relieve their worries during this time.
Whilst not everyone will experience pain at the end of their life, pain management is a key part of palliative care, ensuring comfort and quality of life in this final stage. As a carer you will be looking out for signs of pain and administering pain relief where appropriate as prescribed by the doctor. If you ever feel that their pain is becoming unmanageable, or that the needs of the person you are caring for have changed, it might be worth speaking to the GP to see if there are more options for helping them to remain as comfortable as possible.
Supporting someone at the end of their life with their mental and emotional needs
Coming to the end of their life will naturally bring up thoughts, feelings and emotions that the person you are caring for may not know how to deal with. You can reassure them that this is natural and that you are there to listen. Your palliative team will also be able to offer mental and emotional support for both you and the person you are caring for too. Counselling and therapy are available from hospice-at-home services and are very useful ways to talk through fears and concerns, and process feelings at the end of life.
Towards the end of life, some people may experience confusion and there might be changes in their behaviour. This might make maintaining a relationship with them more difficult, however by noting that this is a symptom of the condition it can make this time easier for you and for them. You can also speak to your care team to see if there is a treatable reason for the changes.
If they do appear confused, you can support the person you are caring for by keeping their surroundings calm and familiar, and by speaking clearly and slowly. Sometimes you might need to remind them who you are and be prepared to do this as many times as necessary. Even if the person you are caring for doesn’t seem to be aware of your presence, physical contact can bring real relief and holding hands or a gentle massage can be very soothing and a way to maintain connection and closeness.
Creating a relaxing environment can have a big impact when helping someone to be as comfortable as possible. You can create a relaxing environment by using soft lighting, keeping the space calm and quiet, or playing low music or natural sounds to name a few. You might consider bringing in flowers or plants with scents they enjoy and place their favourite items and photos of friends and family nearby too.
At the end of their life, spending precious quality time with the person you are caring for will be important, so reading to them or talking with them, even if they can’t respond, can be a wonderful way to connect. If they can talk, there might be lots they want to share, and simply listening will be a great gift to them. Inviting friends and family to visit, to connect on the phone or via video call, are all ways that the person you are caring for can feel connected and say their goodbyes in ways that are right for them.
Managing your own wellbeing
Caring for someone who wants to die at home can be a very beautiful and profound experience. However, it comes with inevitable challenges for you and looking after your own wellbeing will be important. The journey towards those final hours will be different for everyone, and if the needs of the person you are caring for change, or you feel you need more support talking to your professional support network will enable additional support to be put into place or support with moving them to a more suitable setting.
When it comes to caring for someone at the end of their life there is no one right way, and a ‘good death’ can take place at home, in a hospital, hospice or another residential setting. Your presence can be the greatest gift you can give to the person you are caring for and simply being with them, wherever is best for them, will be a great comfort.
This will also be a time when you will be dealing with some difficult emotions of your own as your relationship with the person you are caring for changes. You may experience anticipatory or pre-emptive grief as you imagine a life without the person you are caring for, and feel waves of sadness, anger, guilt and despair at times.
With this in mind, it is important to be open to receive support during this end of life stage as it will mean you are able to be more resilient in caring role and avoid carer burnout during this emotive time.
There are peer support groups you could attend in-person and online for your local area.
Other helpful resources include our articles on looking after yourself as a carer, understanding setting boundaries, managing grief, and managing difficult emotions. Because taking regular breaks will be key for you at this time, our article on accessing respite may also be useful.
You don’t have to go through this experience alone, and we are here to support you at every stage of your caring journey, including caring for someone who wants to die at home. For all of our articles and resources on supporting someone at the end of their life, click here.