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End of life issues

Disease progression

When you're looking after someone who is terminally ill, you may have to understand a lot of information very quickly.

The person you're looking after may require specific types of care to meet their physical and emotional health requirements as they near the end of their life. They may also need different treatments and medications. The physical appearance of the person you're looking after may change, and both you and they may feel more vulnerable.

Your caring role may change, and you may have to give up work or need others to help provide care. You may also feel that the demands of caring full-time are too great. It's important that you stay healthy.

Knowing more about how things may change in the future for you and the person you're looking after can help both of you be prepared.

It can help to talk to your GP, district nurse, social worker or home care team about your needs. They will be able to explain the changing nature of the condition affecting the person you're looking after.

They may suggest more support for that person as well as yourself, such as:

  • Respite care to give you a break from caring. If you have a carer's assessment or if the person you care for has a community care assessment, you might be offered respite care free of charge by your local authority. See Assessments for more information.
  • Hospice day care to help both you and the person you're looking after.
  • A residential stay in a hospice or hospital to help meet the medical needs of the person you're caring for.
  • Home help to help the person you are looking after with dressing, getting up and other daily tasks. This may be available for free after a community care assessment for the person you look after.

If the person you're caring for wishes to remain at home, you may have to make physical changes to your home to make this possible.

It's important that you discuss any change in care with the person you're looking after, if possible. This will help them and others know that you still love them, even though you are no longer able to care for them as before.

Some carers may feel guilty about letting go of some of their caring responsibilities. More support from professionals can allow you to spend more quality time with the person you're looking after. You will also be able to provide them with a better level of care.

To find out more about the changing nature of the condition affecting the person you're looking after, you could:

  • look at a website dedicated to the condition,
  • talk to a GP,
  • talk to the district nurse,
  • talk to other carers at a local carers' centre,
  • talk to carers on a carers' discussion forum, and
  • get publications from a charity concerned with the condition.

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Page last reviewed: 11/12/2013

Next review due: 11/12/2015

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