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Managing at home

Some people who are nearing the end of life want to be at home. Simple things like seeing the garden or a familiar view from the window can be very comforting. They might want to have friends, family and neighbours around – or perhaps they simply want more privacy.

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Other people may be uncertain or say firmly that they don’t want to be at home when they die. They might be worried about becoming a burden, or how the experience will affect their family and friends. Sometimes it can be easier to let a trained carer take care of personal needs, rather than a close friend or relative.

Has your relative or friend expressed their wishes about this previously?

Managing care at home

If care at home is a possibility, you’ll need to get a realistic view of what to expect, and make plans.  Here are some questions to think about.

Do they want to be cared for at home?

If your partner relative or friend is unable to communicate their wishes, do they have an advance care plan or have they made other plans about their end of life care? As someone who knows the person well, it may fall to you to speak on their behalf.

How does the rest of the family feel?

It’s hard to accept that someone you care about is dying. Is everyone ready for the experience of seeing this through at home? It might also change your relationship with the person. For a while, it might mean there’s less time for other people in the family, who also need attention and support.

If children or teenagers are involved, they’ll need extra help to understand what’s happening and to cope. On the other hand, the family may really welcome the chance to have the person they care about at home, so they can help with care and spend as much time together as possible.

The Dying Matters website   has a lot of information for the family and friends of someone who’s dying, including finding support locally. Carers UK also has a local support search  .

What will your role be?

You might want to take on a lot of the care yourself – or you might not. Caring for a person who is terminally ill can be very rewarding, and bring you closer together. But it’s also an around-the-clock job that can put a lot of demands on your wellbeing.

It may change your relationship with the person. You might feel you’re not able to care for them at home. This could make you feel guilty, or as if you’ve let them down. 

Remember that you can get help at home with carrying out personal care tasks. You can find local services on the Carers UK website  . The Dying Matters website   provides information on local support groups that you might find helpful too.

Please use our directory of useful organisations to find further support around the UK.

As a family we want Mum to be cared for at home as it’s what she wants too, but there have been tough times in recent months when we were questioning whether we were doing the right thing. We were really struggling on our own but now we have the help we know we are doing the right thing. 

What help will you need?

In addition to specialist nursing care, as they grow weaker your friend or relative will need a lot of help with washing, eating and using the toilet. They may need incontinence care if they lose control of their bladder and bowels. If you’re busy with caring, you may need extra help with housework, shopping, laundry and cooking.

Some people don’t like to accept help from trained carers, but it can be very difficult to do it all on your own. And these helpers often become a good support system for you.

Do try to take care of yourself. One way of doing this is by arranging respite care, which means having someone to stay with your partner, friend or relative so you can have regular breaks and a good night’s sleep.

As a carer, you have a right to a carer's assessment. Find out more on the NHS Choices website.  

Planning for emergencies

It’s especially distressing when emergencies happen at night and over the weekend. Check with your doctor about who to call at these times, so your partner, relative or friend gets prompt and appropriate care if they need it. You might also be given a ‘Just in Case’ box by your healthcare team. These contain emergency medical supplies like painkillers, along with instructions on how to use them.

What’s practical?

You might need to adapt your home and find room for a lot of equipment such as a hospital bed, a hoist and a commode. You’ll need to be able to get to both sides of the bed, so it can’t be against a wall. Do you have enough room, and can you manage the physical work?

You might find our film guides for carers helpful. They cover some typical tasks you'll need to carry out if you’re caring for someone at home. You might also want to know more about getting specialist equipment and adaptations.

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Try to talk to someone

Wherever your friend or relative is staying, you’ll need someone to talk to about it. Friends and family might be the natural place to turn, but sometimes someone who’s not so close can really understand what you’re going through. Nurses and trained carers are very good at this. Read our article Your own needs for more about getting yourself help.

As a carer, you have a right to a carer's assessment. Find out more on the NHS Choices   website.

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Spiritual support

When someone is dying, people can start asking themselves deep questions about the meaning of life and their beliefs. You can speak to a spiritual adviser whether you’re religious or not. A minister, priest, nun, rabbi or imam, for example, will have been through this experience with many others and they are happy to help people of any or no religious faith.

If you feel this would be helpful for you and your family and friends, ask your hospital or local hospice to put you in touch with a spiritual adviser nearby. Most hospitals and hospices offer religious, spiritual and pastoral care, with representatives from different faiths. They should be able to advise you if you need to access spiritual support in a particular belief or faith.

It’s difficult to think about this now, but they can also help your loved one have a calmer death when the time comes, and support you before and after the person you love has died.

Caring for a dying person is hard work, and having this kind of support can help you stay strong, so you can be there for the person you love.

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External websites

Dying Matters  

Carers UK   – find support in England, Scotland and Wales

Care Information Scotland   – can I get help with caring?

Crossroads Caring for Carers   (Northern Ireland)

NHS   – spirituality and caring 

NI Direct   – caring for someone who is terminally ill

Shared Care Scotland   – respite breaks for Scottish carers

This page is for general information only. It's not intended to replace any advice from health or social care professionals. We suggest that you consult with a qualified professional about your individual circumstances. Read more about how our information is created and how it's used.

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