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you? A guide for carers, by carers Hello, and how are More and more people are

you? A guide for carers, by carers Hello, and how are More and more people are living with cancer because of earlier diagnoses and better treatments. This has resulted in a growing need for people like you, who care for someone with cancer. This resource has been produced for you by carers of people with cancer. During our time caring for a loved one with cancer, we became aware that a carer can often become a forgotten figure who is not provided with the information and support they need. Working with Macmillan Cancer Support, we have used our experiences to develop, shape and write a resource to support other people caring for adults with cancer. This handbook is the result of that work. It can also be helpful for professionals who support carers of people with cancer. The handbook contains handy tips we hope you will find useful when it comes to dealing with the ups and downs of caring for someone with cancer. We have also included information on organisations and other sources of support that helped us during this demanding time. We hope they provide you with the support you need too. Hello, and how are you? As you read this handbook… • Remember that no two situations are identical and no two experiences of caring are the same. This is why the handbook is not intended to be a book of instructions – a ‘how to be a carer’ book. Instead, it includes lots of things that will hopefully strike a chord with you. • Always remember that when it comes to medical questions, it is essential you speak to a healthcare professional for advice. • You will often see reference to ‘the patient’. We felt that although this may not be the ideal choice of words, it was a practical way to refer to the person you are caring for – a shorthand way that is easily understood. • You will see references to many organisations and services within this handbook. If the contact details for these organisations and services are not provided on the page, you will find them in the Further information chapter at the back of the handbook. Contents 1 Information and support 1 2 Working with professionals 9 3 Relationships 15 4 Moods and emotions 23 5 Practicalities 31 6 Employment and work 43 7 Ethical and legal matters 51 8 Death, dying and bereavement 57 9 Life after caring 67 10 Further information 73 7 1 Information and support • Information about services • Organisations that can help • Information about the disease and how it will progress • Information on your rights as a carer ‘ Any number of times people asked me “How’s your wife?” or “How’s Margaret?”, but very rarely did they say “And how are you?”’ Michael 1 1 Information and support Getting reliable information in a format to suit you is a really important way to help you feel more in control of your situation. Sometimes, as a carer, you can feel as if you are on your own. Having information can help you feel less isolated and reassured that help is available if you need it. It can also relieve some of your worry and stress. Information can make it easier to anticipate some of the difficulties you and the person you are caring for might face, helping you to be prepared and plan ahead. It can help you get the right support at the right time. We found it a real help to have information about the cancer itself, organisations and healthcare professionals who can help, as well as information on support that may be available to you as a carer. Information about services There’s lots of information available about cancer, caring for someone with cancer and organisations that can help. Here are some ways you can get hold of this information: • Ask a hospital social worker, practice nurse, district nurse or your GP . • Ask in your hospital if there is a local cancer information and support service. • Every hospital in England now has a Patient Advice and Liaison Service (PALS) which should be able to direct you to local sources of cancer information. • In Wales, you could ask your local Community Health Council about local sources of cancer information. In Northern Ireland, you can find this information on the website of the Northern Ireland Cancer Network – cancerni.net In Scotland, see scot.nhs.uk/ organisations 2 1 Information and support • Your local hospice may also be a good source of information. It is there to provide support to people with life-threatening illnesses, not just to those who are terminally ill. They may also have information about training courses available to you, to help with your caring role. • The internet may be helpful. It’s always important to go to sites where the information is reliable and quality-checked. Speaking to people who are going through the same thing as you can be very supportive. Forums on the internet where you can talk about cancer and the caring role can be a good place to share your experiences and feelings, get support and ask for information about services. Attending a self-help and support group – a group that meets so people can share similar experiences and support each other – may be something you’d benefit from. Visit macmillan.org.uk or call Macmillan for information about groups in your area. Your local council may also run a carers group or forum, where you can find out about services and support in your area. Contact your local social services or social work department for further details. Always try to follow up the leads you are given – you’ll find there is a lot of information, help and support out there. Don’t be put off if you find someone unhelpful when you are looking for information – keep on asking until you get the answers you need. If you want to get involved in influencing cancer services, contact your local user group. You can find out if there is one in your area by contacting Macmillan. 3 Information and support 1 Organisations that can help • You can find out about information and support services in your area by calling Macmillan on 0808 808 00 00. • At macmillan.org.uk you can use your postcode to find your nearest cancer information centre or Macmillan mobile cancer information centre. • The online community on Macmillan’s website – macmillan.org.uk/community – is a good place to talk to other people affected by cancer. • Carers’ centres provide a range of support for carers, including information, advice and training. You can find your local carer centre by searching at carers.org or by calling The Princess Royal Trust for Carers regional offices. See Further information for contact details. • Carers Direct is a free, confidential service provided by the NHS. Their helpline and website provide information and advice for carers. They can also tell you about national and local services for carers that can provide more indepth support, such as advocacy and counselling. Call Carers Direct on 0808 802 0202 or see nhs.uk/carersdirect • Crossroads Care services provide practical care and support in the home to give carers a break. Several Crossroads branches are working in partnership with Macmillan to provide a specialist service for patients with a cancer diagnosis, their carers and families. See Further information for contact details. • Jobcentre Plus has produced a useful leaflet called Help if you are ill or disabled. It has information on financial and practical help, and is available from your local Jobcentre Plus office. You can also download it from jobcentreplus.gov.uk/jcp/ customers/leaflets_and_guides In Northern Ireland, see dsdni. gov.uk/index/ssa for information about financial help available from the Social Security Agency. 4 • Macmillan Cancer Voices is a UK-wide network of people affected by cancer who use their experiences to improve cancer care. To find out more about its work, visit macmillan.org.uk/ cancervoices, call 020 7091 2006 or email cancervoices@macmillan.org.uk • Caring with Confidence is a free training programme for carers aged 18 and over in England. It provides carers with training and information to empower them and help them develop their caring skills. To find out more contact 0800 849 2349 or email cwc.info@ caringwithconfidence.net • An accredited course called ‘The Cancer Support Course’ is run by Macmillan. This offers helpful training to anyone who supports people affected by cancer. You can find out more by calling Macmillan’s Training Administrator on 020 7091 2008, emailing csc@macmillan. org.uk or by visiting macmillan. org.uk/learnzone • Macmillan also offers a six-week course called New Perspectives. This is run by people who have cared uploads/Management/ a-guide-for-carers-by-carers.pdf