Caring for Someone who is Terminally Ill

Focus on Disability - For Disabled People, the Elderly and their Carers in the UK

A guide to the financial, practical and emotional support available to you and the terminally ill person you care for. You may also want to consider alternatives to caring for the person at home.

Financial support

Benefits for the person you care for

The person you care for may be entitled to:

  • Disability Living Allowance, if they are under 65 and need help with personal care and/or getting around
  • Attendance Allowance, if they are 65 or over and need help with personal care
  • Employment and Support Allowance, if they are under state pension age and have an illness or disability which affects their ability to work

There are special rules to help terminally ill people get Disability Living Allowance, Attendance Allowance or Employment and Support Allowance quickly and easily.

Carer’s Allowance

As a carer, you may be entitled to receive Carer’s Allowance. You can keep on getting this for up to 12 weeks if the person you care for goes into hospital and for up to four weeks if they go into a care home provided certain conditions are met.

If the person you care for dies, Carer’s Allowance will usually stop after eight weeks.

Practical support

Support from social services

The social services department of your local council may provide a range of social care services and equipment for terminally ill people.

Assessments from your local social services

An assessment with social services is the first step towards getting help and support for yourself and the person you care for. The person you care for is entitled to a health and social care assessment, while you as a carer are entitled to a carer’s assessment.

Emotional support

Although friends and family can provide emotional support at this difficult time, you may find it easier to talk to a professional counsellor or to other carers in a similar position. The person you are caring for and other family members may also benefit from counselling.

Finding a counsellor

The British Association for Counselling and Psychotherapy (BACP) is the professional body for counsellors. You can search for registered counsellors in your area on their website.

Support groups for carers

There may be support groups for carers in your local area, which could give you the opportunity to talk to other people in the same situation as yourself. Ask at your local council, social services or library.

Help with caring for someone at home

Medical and nursing care

If the person you care for needs specialist medical or nursing care to enable them to continue living at home, you can arrange this through their doctor. Services that may be available include:

  • visits from a district or community nurse – for example to change dressings, give injections or help with bathing or toileting
  • help with getting the person into and out of bed

Services that are provided by the National Health Service (NHS) may vary from region to region, but will always be provided free of charge.

Short-term breaks

Both you and the person you care for may benefit if you can take a short-term break from caring from time to time. This is sometimes known as respite care. You can arrange short-term breaks through your local council’s social services department. A local carers group may also be able to provide, for example, half a days care a few times a month.

Employing a professional carer

If you are caring for someone who needs a lot of care, you may choose to employ a professional carer or carers to share the caring role with you.

Alternatives to caring for someone at home

Hospice care

Hospices are residential units that provide care specifically for people who are terminally ill, and offer support to those who care for them.

Hospices specialise in palliative care, which aims to make the end of a person’s life as comfortable as possible and to relieve their symptoms when a cure is not possible. Hospices are run by a team of doctors, nurses, social workers, counsellors and trained volunteers. Many hospices offer bereavement counselling.

Hospice staff can sometimes visit people at home and are often on call 24 hours a day. It is also possible for patients to receive daycare at the hospice without moving in, or to stay for a short period to give their carers a break.

There is no charge for hospice care, but the person you care for must be referred to a hospice through their GP, hospital doctor or district nurse.

Hospital care

There may be times when a terminally ill person needs to go into hospital. When the person you care for is coming home after a hospital stay, the NHS and your local council should work together to meet their continuing health and social care needs. The person’s needs should be assessed before they leave hospital and a package of care arranged for them.

Care homes

If the person you care for needs a level of care and support that cannot be provided in their own home, a care home could be the answer.

Helping the person you care for prepare for death

It is natural for someone who is terminally ill to want to sort out their affairs and make decisions about what kind of medical treatment they want – or do not want – at the end of their life. The ‘government, citizens and rights’ section of Directgov contains useful information about wills, living wills and the right to refuse medical treatment and resuscitation.

When the person you care for dies

What to do after a death

When someone dies, there are some things you will need to do straight away, or within the first few days and weeks. The ‘government, citizens and rights’ section of Directgov includes guidance on what to do after a death.

Bereavement counselling

When someone close to you dies, you may benefit from counselling from a specialist bereavement counsellor.

Benefits and bereavement

If the person you care for dies, Carers Allowance will usually stop after eight weeks.

If your spouse or civil partner has died, you may be able to claim one or more of the following bereavement benefits:

  • bereavement payment – a single tax-free payment for people who are under state pension age when their spouse or civil partner dies
  • widowed parents allowance for people who have dependent children
  • bereavement allowance for those aged 45 and over when their spouse or civil partner dies