Information and support for people who look after someone who has been diagnosed with a life-limiting disease. Are you a carer?
If you look after a friend or family member who is unable to look after themselves, you are a carer.
You are still a wife, husband, partner, friend, parent, son or daughter. You are not changing role, just adding something extra.
There is no standard picture of a carer. Caring for someone can be a gradual process, or it can happen suddenly. It can last for a few weeks, or several years. It can occupy a few hours each week, or 24 hours a day. You might help someone wash or dress themselves. You might drive them to hospital appointments or do their shopping. You may also provide company and emotional support.
Help and support
Caring can be very rewarding, but it can also be hard work and stressful. It can be a confusing time, with lots of information to take
in and unexpected changes to deal with. Make sure health and social care professionals know that you are a carer. You are part of the care team and it is important that you receive the information, help and support you need.
Using this booklet
This booklet contains information for anyone who looks after a friend or relative with a terminal or life-limiting illness. It includes information on finding help and support, and what to expect when caring for someone at the end of life. There are also useful contact details at the back of the booklet. Some of the content deals with sensitive issues about caring for someone at the end of life.
This booklet has been produced by Help the Hospices, the national charity for the hospice movement. We support over 220 local hospices in their vital work caring for people with terminal illnesses, as well as their families and carers.
Caring at home
Talk to your GP, district nurse, health visitor, social worker, hospital or hospice about what help you can get in the home. You might need practical support, such as helping the person you are caring for to wash. You might want to take a break from caring for a few hours each week. You might also want to plan what would happen to the person you care for in an emergency, such as if you were taken ill.
If you are providing hands-on care, you will need information and advice. You will probably need to know about lifting and moving the person you care for, what they can eat, the side effects of medication and how to recognise new symptoms. You will also need information about the illness itself. Make sure you ask questions. There is a lot to take in so do not be afraid to ask the same questions over again. You might find it useful to take notes when you talk to professionals.
Ask your local social services department for a carer’s assessment. This is an assessment of your needs as a carer. It aims to make caring easier for you by supporting you and the person you look after. The assessment should take place somewhere convenient, such as your home. You can ask to talk to the person carrying out the assessment without the person you care for being present. Tell the person carrying out the assessment what would help you, and be honest about the amount of caring you would like to do. The assessment must also take your interests, work and other responsibilities into consideration.
Adapting your home
Adapting the home of the person you care for can help them live as independent a life as possible. Your local social services department will put you in touch with the occupational therapy team. They can tell you which types of equipment are available.
Other sources of help
Line: 0845 766 0163
24-hour confidential emotional support for people experiencing feelings of distress or despair Telephone: 08457 909090 Email: firstname.lastname@example.org Website: www.samaritans.org.uk
Other useful contacts
■ UK Government See the section 'Caring for someone’ Website: www.direct.gov.uk ■ DIPEx Personal experiences of health and illness. Website: www.dipex.org.uk
■ NHS Direct Telephone: 0845 4647 (24-hours) NHS 24 (Scotland): 08454 24 24 24
Website: www.nhsdirect.nhs.uk■ The British Red Cross Services includes short-term equipment loans and transport. Website: www.redcross.org.uk18
Local contacts Use this page to keep a note of useful local contact details’ surgery:
District Nurse: Macmillan/Specialist Nurse: Social Services Adviser: Care Assistant/Home Care Team: Carers Centre: Hospital:
Hospital Consultant: Hospital Specialist Nurse: Hospice:
Hospice Doctor: Hospice Day Care Nurse: Hospice Home Care Team: Other useful contacts: Help the Hospices
Help the Hospices supports over 220local hospices across the UK. This support is provided through a wide range of services, all aimed at helping hospices
Provide the best care for patients and their families. These include training and grants for hospice staff and volunteers, national programmes of advice, information and support, special award programmes to fund new services and the coordination of national fundraising initiatives.
Hospice or palliative care is for those whose illness may no longer be curable. It allows them to achieve the best possible quality of life. Hospices also support families and carers. Hospice care is based on the simple idea that a personas unique physical, emotional and spiritual needs and the belief that every patient should be treated as a whole person.
Address: Hospice House,
34-44 Britannia St, LondonWC1X 9JG
General enquiries: 020 7520 8200
Hospice Information: 0870 903 3 903
(Calls charged at national call rates)
Help the Hospices produced this booklet as part of the Care for the Carers of the Terminally Ill project, funded by theTubney Charitable Trust. This project aims to reach those people who care for a relative or friend with a terminal or lifelimiting illness through the development of new information and support services for further information Telephone: 020 7520 8200
This booklet is based on information from the Caring for Carers pack, published by Help the Hospices in 2004. These organisations were particularly generous in contributing materials to the pack: ■ St Christopher’s Hospice,
south east London■ Carers UK■ Carers Support Project, Rhondda Cynon Taff The publishers and authors make no representation, express or implied, with regard to the accuracy of the information contained in this publication and cannot accept any legal responsibility for any errors or omissions that may occur.© Help the Hospices 2006
Registered in England & Wales number 1014851