the end of life - be.macmillan
TRANSCRIPT
Palliative Care, End of Life Care and Bereavement
The end of life
© CHANGE 2016
This booklet uses easy wordsand pictures to help you getinformation about cancer.
You might want someone tohelp you look at the bookletso you can talk about it.
This booklet can help youlearn about cancer. But this is not the same as talking toyour doctor. If you are worried about your health, you should talk to a doctor or nurse.
There is a Word Bank at theback of the booklet to helpwith hard words. Any wordsin bold you can find in theWord Bank.
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The end of life
You can read this booklet if you want toknow what happens atthe end of life.
The end of life - the last few days
When someone is dying,there are certain thingsthat happen to them inthe last few days of life.
You may feel very tiredand weak and want tosleep all the time. You will probably be in bed all thetime and may not be ableto move around much.
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The end of life
Even if you just want to liestill or sleep, you can stillask for someone to staywith you.
You might not want to eator drink anything anymore.
You might want them tojust be there to hold yourhand or sit with you evenif you do not want to talk.
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The end of life
You might feel confusedand not know who yourfamily are or the peoplearound you. You may feellike you are in a dream.
Slowly you may feel likeyou are in a deep sleepall the time. You can stillhear people if they aretalking to you. But youprobably won’t be able totalk to them.
Your feet and hands mayfeel cold. Your skin mayfeel sensitive so peoplewill have to be gentle whenthey are touching you.
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The end of life
For most people their lastmoments of life are verypeaceful. Their breathinggets slower and thenstops.
After you have died yourfamily and friends will besad. But they will havedifferent happy memoriesto remember you by.
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They will always remember you.
The end of life
Word Bank
Drawing by Tracey HarrisonVolunteer and Illustrator with learning disabilities
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Word Bank
BereavementBereavement is the feelingof loss and grief thatsomeone may feel whensomeone they loved, orwere close to, has died.
End of life careThis is care and supportto help a person duringthe last weeks and daysof their life until they die.
Palliative careThis is the support andcare people have whentheir illness can’t becured. It means makingthe person as comfortableas possible with medicines.
It also means helpingthem with their feelingsand any spiritual needs.
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Word Bank
Notes...
Useful contacts
Drawing by Tracey HarrisonVolunteer and Illustrator with learning disabilities
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Helpful organisations
Useful contacts
Cancer Research UKA charity that is researching treatments for cancer. Its website has lots of information about cancer.Phone: 0808 800 4040Web: www.cancerresearchuk.org
Hospice UKGives information about hospices in the UK. Phone: 020 7520 8200Web: www.hospiceuk.org
Macmillan Cancer SupportA charity that helps people who have cancer. They give practical, medicaland financial support. They try to make cancer care in the UK better.Phone: 0808 808 00 00Web: www.macmillan.org.uk
Marie CurieA charity that helps people who are dying.Phone: 0800 090 2309Web: www.mariecurie.org.uk
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NHS ContactsThese contacts give you information about your health and health services:England and Scotland Phone: 111Wales Phone: 0845 46 47Northern Ireland Web: www.hscni.net
Palliative Care for People with Learning Disabilities Network (PCPLD Network)A group of people sharing information to improve end of life care forpeople with learning disabilities.Email: [email protected]: www.pcpld.org
Paul’s Cancer Support CentreGives help, information and complementary therapies to people withcancer. Phone: 0207 924 3924Web: www.paulscancersupportcentre.org.uk
RESPONDGives therapy to people with learning disabilities after trauma or abuse.They also offer training and support to carers.Phone: 0808 808 07 00Web: www.respond.org.uk
Useful contacts
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Written and audio materialBooks Beyond WordsA series of picture books for people with learning disabilities. The bookstalk about cancer, health and bereavement.Web: www.booksbeyondwords.co.ukPhone: 020 8877 9799Email: [email protected]
FAIR MultimediaPublishes a range of health leaflets, audio discs and CDs for people with learning disabilities. This includes a series on cancer.Email: [email protected]: 0131 662 1962Web: www.fairadvice.org.uk/health-publications.php
SamaritansHelps anyone who is in distress or suicidal. They are open all the time - 24 hours a day.Phone: 116 123Web: www.samaritans.org.ukEmail: [email protected]
Useful contacts
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Videos and DVDsLeeds Animation WorkshopHas animated films on social issues for people with learning disabilities. Thereis one called ‘Getting Better’ about going to the doctor and the health clinic.Phone: 0113 248 4997Web: www.leedsanimation.org.uk/index.html
Speak Up Self AdvocacyHas DVDs and booklets for people with learning disabilities about health and illness.Web: www.speakup.org.uk
Online help
Useful contacts
www.easyhealth.org.ukHas lots of online health information that is easy to understand.
www.macmillan.org.ukHas lots of information aboutcancer and where to get help.You can also talk to other people with cancer in the online community.
Macmillan Cancer Support has reviewed the information in thisbooklet and paid for it to be produced. They are a charity whohelp people with cancer. They have nurses and other healthworkers. They try to make cancer care in the UK better. Theyhave experts who can answer your questions about cancer andhow it affects your life. You can callMacmillan on 0808 808 00 00or textphone 0808 808 0121 (Mon–Fri, 9am–8pm). Or go tomacmillan.org.uk
CHANGE is a leading national Human Rights organisation led bydisabled people. We work for equal rights for all people withlearning disabilities. The cancer books and booklets thatCHANGE have produced are part of an ongoing campaign toraise awareness about the issues of cancer for people withlearning disabilities. You can call CHANGE on 0113 242 6619,email [email protected] or find us at www.changepeople.org
This easy read booklet was produced by CHANGE © CHANGE 2016