Being cared for at home

Most people would choose to die at home, if they know they will get the care they need. Staying at home allows you to be in familiar surroundings with close family or friends to care for you. It may help you feel more in control and may make it easier for you to say your goodbyes.

It’s important that you and your carers have as much support as possible. Different healthcare professionals and voluntary organisations can help manage any symptoms you may have and support you and your family at home. If you’d like to be at home, let your nurse or doctor know.

Health professionals and organisations can provide care, equipment and help at home, so you and your carers get practical and emotional support. Your GP or district nurse can help with this.

Being looked after at home

Most people would choose to die at home, if they know they will get the care they need. Staying at home allows you to be in familiar surroundings with close family or friends to care for you. It may help you feel more in control and may make it easier for you to say your goodbyes.

Although dying is a natural process, few people have experience of looking after someone who is dying. If you’re a carer the thought of looking after someone you are close to at home can be frightening. However, with the right help it can also be rewarding and a time of great closeness.


Who can help if you’re looked after at home

Caring can be hard work, both physically and emotionally, so it’s important that you and your carers have as much support as possible. It’s not always easy to ask for help, as we often feel we should try to cope alone. However, there are many health and social care professionals who can help you.

Your district nurse, specialist nurse or GP can tell you how to access these health and social care professionals and voluntary organisations. They will also be able to tell you about the specific types of help and support available in your area.

Your GP

While you’re at home, your GP has overall responsibility for your care. They can help you if you:

  • Are worried about any changes in your symptoms. They can arrange to see you either in the surgery or at home. They will discuss treatments to help control any symptoms you may have.
  • Want to talk through what may happen as you become less well.
  • Want to make an advance statement of your wishes or Advance Decision to Refuse Treatment or a plan for dealing with emergencies (although this isn’t often needed) so that you get the care you want (see Advance care planning for more information).
  • Need nursing care. They can arrange for you to be seen by a district nurse who will help to organise this for you at home.
  • Need specialist care from a palliative care team. They can arrange for you to be seen at home by a palliative care nurse.

District nurses

District nurses work closely with GPs. They will visit you at home and assess your nursing needs. They can help with:

  • Coordinating your care. They can contact other health or social care professionals to help with your care, if needed.
  • Monitoring and treating any symptoms you may have.
  • Giving injections, changing dressings, giving advice and support on pressure area care and toilet problems, such as incontinence and constipation. They may organise equipment to help with pressure care or continence.
  • Showing your relatives or carers how to move you and take care of your personal needs.

District nurses often work with palliative care nurses to help support you and your carers so that you can stay at home. They may be able to arrange for a social carer or a healthcare assistant to help you with things such as washing and personal care.

Specialist nurses

Some nurses specialise in caring for people with specific diseases or conditions such as:

  • cancer
  • heart failure
  • renal disease
  • motor neurone disease.

They are often called a clinical nurse specialist (CNS). They work in partnership with your GP, district nurses, hospital or community team.

Marie Curie Nurses

Marie Curie provides free nursing care to people with all terminal illnesses across the UK, as well as support for family and friends. Marie Curie Nurses generally provide one-to-one nursing care and support overnight in your home, usually for eight or nine hours. In some areas, they also offer care for a shorter period of time, or during the evening or daytime, as well as care at very short notice in a crisis.

If you would like care and support in your home from a Marie Curie Nurse, contact your GP, district nurse or specialist nurse.

Hospital or community specialist palliative care teams

Specialist palliative care teams provide care to help improve the quality of life of people and their carers who are coping with life-limiting progressive illnesses, including cancer. You may be referred to a palliative care team if you need specialist support or care. For example, if you have troublesome symptoms that need controlling.

Hospital palliative care teams are usually based in a hospital. They can visit you if you’re an inpatient or if you’re attending a clinic appointment.

Community palliative care teams are based in the community. They are often linked to a hospice and can visit you at home.

What do palliative care teams do?

Palliative care teams can give you advice on pain control, coping with other symptoms, emotional support and practical problems.

Palliative care teams include specialist palliative care nurses and doctors. Many teams also have, or work closely with, a social worker, a counsellor, an occupational therapist, a physiotherapist and a spiritual care coordinator or chaplain.

Specialist palliative care nurses are experienced in assessing and treating any symptoms you may have. They can also provide counselling and emotional support for you and your carers. Most specialist palliative care nurses work closely with a wider hospital or community palliative care team, including doctors and other healthcare professionals.

Some specialist palliative care nurses are called Macmillan nurses. However, many Macmillan professionals are nurses who have specialist knowledge in a particular type of cancer. You may see them when you’re at a clinic or in hospital.

Doctors specialising in palliative medicine give expert medical advice on the management of symptoms. They work closely with palliative care nurses and may visit people at home, if needed.

Some community palliative care teams have nurses or healthcare assistants who can visit you at home and provide practical care, such as washing, dressing and giving drugs. A specialist palliative care nurse will tell you more about the care provided by their team and arrange it for you.

Social workers/care managers

If you need help with personal care, such as washing and dressing, a social worker or care manager can arrange a care package for you. They may also be able to arrange additional help for housework, shopping and cooking.

You or your doctor or district nurse can contact them to ask for an assessment of your needs and your carer’s needs. You may be asked to pay towards the cost of this help, but it may be funded for you in some circumstances.

Social workers or care managers can also tell you about any benefits you may be able to claim. They may also be able to provide more advanced counselling and emotional support for you and your carers.

Physiotherapists

Physiotherapists can help you to move around. They can also give you information and support about pain relief and breathing problems.

Occupational therapists

Occupational therapists can help you maintain your independence. They can visit your home to see if specialist equipment would help you move around and do things for yourself for as long as possible. After their assessment, they will arrange to get the equipment you need.

Occupational therapists can also help you manage symptoms, such as fatigue and anxiety.

Counsellors

Counsellors are trained to help people in all types of situations. Seeing a counsellor can help you understand and express your feelings, and cope better with your situation.

Spiritual care coordinators or chaplains

Spiritual care coordinators or chaplains offer spiritual care and support. Even if you don’t have a spiritual or religious faith, you may still find it helpful to talk to a chaplain about how you are feeling.

Voluntary organisations and charities

Voluntary organisations and charities offer various kinds of help, including information, loans of equipment, grants and transport.

Some organisations have volunteers who can provide short periods of respite care to give your carer a break during the day time. Others, including Marie Curie, provide befriending services for people who are on their own. They can introduce you to a trained volunteer who may be able to give one-to-one help and support.

Your district nurse, specialist nurse or GP can tell you how to access these health and social care professionals and voluntary organisations. They will also be able to tell you about the specific types of help and support available in your area.

There were many times looking after my husband at home when I wasn't sure what to do. It's very disconcerting when you're caring for someone who is dying and you just don't know when he might go.

Hilary

We were supported by the local GP and district nurses. Although Fiona didn’t talk about where she wanted to be, I knew she wanted to be with us and not in a hospice.

Susan


Where to get the equipment you need at the end of life

Your district nurse or occupational therapist can assess your needs and organise equipment to help you manage at home.

For example, your district nurse can arrange for you to have:

  • a commode, urinal, bedpan or incontinence sheets
  • a special mattress or chair cushion
  • a hoist or sling
  • a special bed – like a hospital bed with adjustable head and foot sections.

Your occupational therapist can assess you and possibly supply you with:

  • a wheelchair or ramp
  • stair rails
  • specialist equipment to help you move or to help others to move you
  • grab rails and other equipment for your shower or bath.
  • advice on small gadgets and where you can buy them. For example, two handled mugs and special cutlery.

If you haven’t seen an occupational therapist, but need some equipment that they usually supply, ask your district nurse, GP or community palliative care team to arrange for one to visit your home.

Many shops and organisations also sell or hire aids and equipment. The British Red Cross hires out equipment such as commodes and wheelchairs. You can also buy items, such as incontinence pads and urinals, from most large chemists or on the internet. You may be able to get financial help for equipment and adaptations through your local council.

You can find more information for carers and people who are ill on the Marie Curie website.

If you don’t feel you’re getting the practical or emotional help and support you need, it’s important to let someone know. You can talk to your GP, district nurse or palliative care team. Tell them how you are feeling and what you think you need.


Working together to create information for you

We worked with Marie Curie Cancer Care to write our End of life information.

Thank you to all of the people affected by cancer who reviewed what you're reading and have helped our information to develop.

You could help us too when you join our Cancer Voices Network.

Back to Dealing with the news

Coping with the news

Hearing that you may be reaching the end of your life can be very difficult, but there are people who can support you.

Sorting things out

When people are nearing the end of their life, many find they have things they want to sort out.