Caring for someone who is terminally ill

You and the person you care for could get financial, practical and emotional support. This could include entitlement to disability or employment allowances.

Financial support

You or the person you care for may be entitled to some financial support.

There are certain allowances paid to people with disabilities .The person you care for may be entitled to:

  • Personal Independence Payment (PIP), if they are under 65 and need help with personal care 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 PIP, Attendance Allowance or Employment and Support Allowance quickly and easily.

Carer's Allowance

As a carer, you may be entitled to Carer's Allowance. You can continue 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 usually stops after eight weeks.

Practical support

There is support available from different organisations for carers. It's important that you have enough practical and emotional support in your caring role.

Support from social services

The social services department of your local Health and Social Care Trust may provide social care services and equipment to terminally ill people.

Assessments from the Trust

An assessment with social services is the first step to 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. As a carer, you 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 other carers in a similar position. The person you're caring for and other family members may also benefit from counselling.

Support groups for carers

There may be support groups for carers in your local area. This could give you the opportunity to talk to other people in the same situation as yourself.

Help with caring for someone at home

There are different options to help you care for someone at home.

Medical and nursing care

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

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

Services available can vary between trusts. 

Short-term breaks

Both you and the person you care for may benefit if you can take a short-term break from caring occasionally. This is known as "respite care". You can arrange short-term breaks through your local Trust.

Employing a professional carer

If you're caring for someone who needs a lot of care, you could 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 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 have doctors, nurses, social workers, counsellors and trained volunteers. Many hospices offer bereavement counselling.

Hospice staff can 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. The person you care for must be referred to a hospice through their GP, hospital doctor or district nurse.

In Northern Ireland, hospice care is provided by:

Hospital care

There might be times when a terminally ill person needs to go into hospital. If the person you care for is coming home after a hospital stay, your local Trust will meet any continuing health and social care needs. The person's needs should be assessed before they return home and a care package arranged for them.

Care homes

If the person you care for needs care and support they cannot get in their own home, they might need care in a residential or nursing home.  To read about care homes, go to:

Helping the person you care for prepare for death

It's natural for someone who is terminally ill to want to sort out their affairs. The 'Death and bereavement" section of nidirect has information about making a will.

When the person you care for dies

There are things to consider if you care for a terminally ill person.

What to do after a death

When someone dies,  you will need to do certain things immediately, or within the first few days and weeks.

Bereavement counselling

When someone close to you dies, you may benefit from specialist bereavement counselling. The charity Cruse Bereavement Care can advise you about seeing a counsellor.

Benefits and bereavement

If the person you care for dies, Carer's Allowance will usually stop after eight weeks. If your spouse or civil partner dies, you may be able to claim one or more of the following bereavement benefits:

  • Bereavement Payment is a single tax-free amount for people who are under State Pension age when their spouse or civil partner dies
  • Widowed Parent's Allowance is for people who have dependent children
  • Bereavement Allowance is for people aged 45 and over when their spouse or civil partner dies
  • Bereavement

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