Looking after yourself while caring for someone who is dying

Your relative may need turning every few hours, a sip of water, or somebody to sit with them when they are restless or frightened. You may lie awake listening to their breathing even when nothing is needed. After a week or two of that it becomes hard to think clearly in the day, and it is harder to care well, and to look after yourself, on broken sleep.

Start with the free help. Ask the district nurse or the GP whether the local hospice at home service or the Marie Curie hospice care at home service can offer nights. Marie Curie says its care can be day or night, and that the professionals already looking after your relative, such as the district nurse or GP, refer you into it. What is available depends on where you live, and night care at end of life goes through each service in turn. If your relative has been assessed for fast-track continuing healthcare, the NHS may fund care at home, including nights, so ask the nurse whether that has been considered.

Where there are gaps, a paid night carer can fill them one night at a time. Whether to book a sleeping or a waking night depends on how much your relative needs in the night, and waking night or sleeping night sets out how to tell. At this stage it is worth asking about a waking night first, because the point is that somebody else is awake so you can sleep. Three waking nights a week come to £450 to £480. The cost of end-of-life care at home puts nights alongside visits and live-in care.

In the example nobody is on more than two nights, and the person who lives in the house sleeps on six of them. Everyone also knows the rules in advance, including who rings the nurse and that the rota stops if your relative changes quickly. Brothers and sisters who live further away can still take a weekend night, or pay towards a night they cannot do themselves, and sharing the care between siblings covers how to divide the work fairly and keep it that way.

If you use PrimeCarers for the paid nights, the account can be shared. The person who set it up can invite brothers, sisters or a partner from the My Family page, each with their own login, and everyone with Owner, Family Member or View Only access gets the carer's visit reports by email. The person who was off can read about the night rather than rely on a tired phone call. Sharing care with family on PrimeCarers explains the levels of access.

Accepting help can be hard when you feel this is something only you should do. The people offering want to do something for your relative, and helping you is the way they can. Hospice UK advises explaining clearly to family and friends what you are going through so they can understand and support you, and asking the nurses for help when they are there, whether that is something practical or a conversation about how you are feeling. Its page on looking after yourself when someone is dying also suggests fresh air and something nourishing to eat every day.

You are also entitled to a carer's assessment from the council, which the NHS describes as free for anyone over 18 who cares for somebody. It can lead to a break from caring or practical help. At this stage it may not come through in time to make a difference, so ask for it and do not wait for it. If you feel you are letting your relative down by stepping away for a few hours, feeling guilty about taking a break is written for you.

The law on time off for dependants is the one to use when things change suddenly. Section 57A of the Employment Rights Act 1996 lists the situations it covers, and they include arranging care for a dependant who is ill and time off "in consequence of the death of a dependant". There is no fixed number of days: GOV.UK says it depends on the situation. Carer's leave is for time you can plan, and a week taken as single days can cover the nights you are on the rota or the days you need to be at home for the nurse.

Tell your manager what is happening early, even without every detail. Your employer may have a compassionate or special leave policy that goes further than the law, and a manager who knows can make it easier to leave at short notice. These rights do not apply if you are self-employed. Balancing work with caring goes through each right in more detail, including how to ask.

Marie Curie's page on anticipatory grief describes feelings that can come in these weeks: sadness, worry about what is coming, anger, hopelessness, numbness, and guilt or shame about some of the thoughts you have. It says many people feel that the death would be a relief, so they no longer have to live like this, and that it is OK to have these thoughts. It also says some people feel guilty for these thoughts, as if they were willing the person to die. Having them is a sign of how hard these weeks are, and they sit alongside the love you have for the person.

Sue Ryder's page on grieving before someone dies adds regret: wishing you had spent more time with the person, or had said things differently in an argument years ago. It suggests using the time you have now to talk about them together, if you both can. Both charities suggest talking to people you trust, and Marie Curie says a counsellor or psychotherapist can help you with these feelings now rather than waiting until after the death. You can find the local hospice through the Hospice UK hospice care finder, and ask what support it offers families.

If other family members want time to say goodbye, ask the nurse whether now is the time to call them. Nobody can say exactly when a death will come, and everyone is different, but a nurse can tell you what they are seeing. The last days and hours describes the changes that can come near the end, and talking about dying with a parent covers the conversations that are easier to have earlier on.

You may hope to be in the room when your relative dies, and it does not always work out that way. Sometimes a death comes while somebody has gone to make a cup of tea or has finally fallen asleep. If that happens to you, it does not mean you let them down. You were there through the weeks that came before, and that is what they will have known.

Afterwards, nothing has to happen quickly. The first days after a death at home explains who to ring, the paperwork, what happens with a paid carer's bookings, and the support that is there for you once the caring has stopped.