Looking after someone with a lung condition

When caring ends

There comes a time for all of us when we need to think about the end of a life.

Your caring role may change if the person you care for moves into permanent residential care or a hospice, or has full-time care at home.

If you lived together, but their circumstances or health mean that you no longer do, it’s important to think about how much time you still spend helping the person you care for, even if you now live apart.

You may still devote much of your time to caring from a distance, managing their affairs and dealing with health care professionals. If you still fall into the definition of ‘carer’ you may be entitled to help and benefits.

If the person you care for moves into residential care or a hospice, you should discuss with them and staff how often you can visit. If you visit regularly, you may want to become a volunteer, helping out at events and activities.

It can be hard to adjust to life when your caring role alters or comes to an end. You may find you have more time on your hands and decide to spend time with your family and friends, or go back to work. You may find that the exhaustion of having been a carer for a long time catches up with you.

Whatever you do, there are practical issues you should deal with promptly:

  • Central government and local authority support – if you claim carer’s allowance, or had a carer’s assessment or any other financial help towards your caring role, you must inform the relevant authorities that you are no longer a carer. If you lived with someone whose housing was subsidised or provided by the state, and you no longer live with them, the local authority needs to know.
     
  • GP – if you told your doctor about your caring role, tell them about any changes

Carers UK has advice and suggestions about what you can do and how to cope when you caring role changes or ends.

Death

When the person you care for dies, you will probably feel a range of emotions. As a carer, your role at this time will depend on the relationship you had and the arrangements made before their death.

If the person dies in hospital, in a care home or in a hospice, the staff will let their named contact know what they need to do. If they die at home when you are caring for them, you must inform your GP, register the death and contact a funeral director.

Carers UK provides a comprehensive list of practical things you may need to address, as well as information about coping after someone dies.

Funeral

Arranging a funeral for the person you care for may be upsetting, but some people find it plays an important role in adjusting to the end of life. The person you cared for may have indicated how they wanted their funeral to be carried out.

If you are arranging the funeral, the important thing is to think about what kind of funeral they would want. The funeral director will guide you through the practical and legal arrangements.

Bereavement

You are likely to have had a very special relationship with the person you cared for. You may feel a great sense of loss when they pass away.

It might be when the practical arrangements have been made and the funeral has passed that you start to grieve. However, some people experience strong feelings such as loss, grief and mourning before the person has died.

At this time, and throughout your time as a carer, it is important that you take time for yourself and seek the help you need.

You may want to share your feelings with family and friends but, equally, you may not feel comfortable doing this. Some people find it easy to talk to a particular person – don’t be afraid to let them know how you feel.

Need help?

Death can be a very difficult thing to deal with. To speak to someone who cares, call our helpline on 03000 030 555, Monday to Friday between 9am and 5pm.

Other contacts

The organisations below provide support and advice about end of life care and beyond.

Age UK

Produces a range of information about the end of life.

0800 169 2081           
 

Cinnamon Trust

A network of volunteers who provide dog walking and pet fostering while owners are in hospital.

01736 757900
 

Cruse Bereavement Care

Provide support for bereaved people.

0844 477 9400
 

Hospice UK

Provides information about hospice care in your area.

020 7520 8200
 

National Council for Palliative Care

Promotes the improvement of palliative care.

020 7697 1520
 

Natural Death Centre

Provides support for those dying at home.

01962 712690
 

More information

Read more about the end of life with a lung condition.

Download our looking after someone with a lung condition PDF (322KB)

Last medically reviewed: November 2015. Due for review: November 2018

This information uses the best available medical evidence and was produced with the support of people living with lung conditions. Find out how we produce our information. If you’d like to see our references get in touch.