Being cared for at home

You may want to be at home as much as possible. But you may need some nursing care or support from other professionals to help you manage. Having support can help both you and your carers.

The support and services available are different across the UK. Your GP or social worker can talk to you about what is available in your area.

Your GP has overall responsibility for your care when you are at home. They can prescribe any drugs you need and arrange help from other professionals. They will also arrange for you to go into hospital or a hospice if needed.

You can talk to your GP about what may happen as you become less well. They can discuss plans for the future with you. This might include:

• planning for emergencies
• making a statement of your wishes or an advance decision to refuse treatment
• deciding where you might prefer to be cared for as your illness progresses.

Your GP can also arrange for a district nurse to visit you if you need nursing care.

Community or district nurses can make regular home visits to help with:

• nursing care, such as changing dressings and giving medicines
• giving advice and support on pressure area care and toilet problems, such as incontinence and constipation
• showing your carers how to move you and look after your personal care needs, such as washing and toilet needs
• arranging for a social carer or healthcare assistant to help you with personal care
• arranging practical aids, such as pressure-relieving mattresses or commodes.

A community or district nurse will work with palliative care nurses to help support you and your carers so you can stay at home.

In some parts of the UK, you can get support from a Marie Curie nurse or healthcare assistant. A nurse can advise you about medication. A healthcare assistant can help with practical tasks such as washing and dressing.

Marie Curie can sometimes provide nursing overnight from a registered nurse or healthcare assistant. Your GP or district nurse can tell you if Marie Curie nurses are in your area.

Social services can help if you find some parts of your daily life difficult. Social care can include getting help with:

• personal care, such as washing and dressing
• tasks like cleaning and cooking.

There are different ways to access social care. Your hospital team, GP or district nurse can refer you to social services. Or you can refer yourself.

You will have a needs assessment before any care is arranged. A social worker will ask you about your daily routine and what you find difficult. Sometimes an occupational therapist or nurse may do this instead.

Each local authority has its own assessment procedure. Local authorities will have information on their website. They can also provide an up-to-date list of local providers and can signpost you to services. Find your local authority here.

You usually have to pay towards the cost of services. This depends on your financial situation. If you have a lot of care needs, you may be eligible for funding for your care. Your GP or a social worker can tell you more.

Physiotherapists can help keep you moving. They can advise you and your carers on the best and safest way for you to move around your home. They can also offer treatment and exercise programmes to help you manage symptoms such as pain, breathlessness and fatigue.

Occupational therapists working in the community can help you keep your independence. They can assess your situation and arrange for any aids or changes you need.

Aids might include toilet frames, handrails or a wheelchair. A change might be something like fixing safety rails in your bathroom or making doors wider.

An occupational therapist may be able to help you change your daily routines and activities to help you manage low moods. Some can also help you manage anxiety, fatigue and breathlessness.

Voluntary organisations and charities offer different kinds of help, including information, help with tasks at home, loans of equipment, grants and transport.

Some organisations have volunteers who can spend time with you to give your carer a break during the daytime. Others can provide befriending services for people who are on their own.

If you are caring for a loved one, you may be anxious about looking after them at home. However, with the right help, it can be a rewarding experience.

You might find our information about supporting someone helpful. You can also:

• Call the Macmillan Support Line for free on 0808 808 00 00.
• Chat to our information and support specialists online.
• Visit our Online Community to talk to other carers or the family and friends forum.