A carer is someone looking after a partner, friend or family member who is unable to manage by themselves. Every caring role is different. Becoming a carer can happen gradually or very suddenly and can last for days or years.
Becoming the carer of a friend or family member at home with a life-limiting (terminal) illness can be both rewarding and challenging. A range of issues may arise throughout the caring journey, including recognising the right time to consider residential care or caring for someone nearing the end of their life at home. Some people want to spend their last days in a hospice or hospital, but many more want to be in the familiar surroundings of their home if possible.
For many, this will be their first experience of caring for someone. You may need to gain an understanding of what to expect, what you should do and what support there is to help you at every stage.
You and the person you are caring for can talk to your GP, district nurse or members of your local community healthcare team / integrated neighbourhood team about what support might be needed. You’ll want to get a realistic view of what to expect so you can make plans. Your friend or family member might need specialist nursing as well as help with washing, eating and using the toilet. They may need continence care if they lose control of their bladder and bowels.
Dr Lindsey Crockett, senior partner at the Peninsula Practice and the Ipswich and East Suffolk Clinical Commissioning Group’s end of life care lead has written a short guide for carers with simple, practical tips that can make a great difference to an unwell person:
- Suffolk County Council
- Marie Curie
- Suffolk Family Carers
- East Suffolk and North Essex NHS Foundation Trust (ESNEFT)
- NHS Ipswich and East Suffolk Clinical Commissioning Group (IESCCG)
- Local carer support groups
- Further information and additional resources
Suffolk County Council
The Suffolk County Council website provides information on help for carers, financial and wellbeing support, carer’s assessment, respite, Family Carers Emergency Plan, events and updates:
The Marie Curie website provides information and support on what to expect – from day to day caring to looking after your own needs. They explain what to expect in the last weeks, days and final moments of life which can help you feel more prepared.
They also provide a range of booklets and resources including easy read booklets. If you live in the UK, you can order any of these free of charge by selecting a booklet online or by calling the Marie Curie Support Line:
- mariecurie.org.uk – Caring for someone with a terminal illness
- mariecurie.org.uk – Booklet: Being there for someone with a terminal illness
- mariecurie.org.uk – Booklets and resources
Marie Curie’s support line provides both practical and clinical information, along with emotional support if you’re living with or caring for someone who has a life-limiting (terminal) illness. The support line team also moderate an online community which has a ‘Carer’s Corner’ for those supporting someone with a life-limiting (terminal) illness (carer, loved one, family friend or neighbour) to share worries and concerns with others in a similar situation:
- mariecurie.org.uk – Marie Curie Support Line Tel: 0800 090 2309
- community-mariecurie.org.uk – Marie Curie Online Community
Suffolk Family Carers
Suffolk Family Carers is an established charity, helping family carers of all ages across Suffolk get the information & support they need to maintain their own health and wellbeing alongside that of the person they care for.
Their ‘Information Hub’ is staffed by friendly experienced advisers who will have a conversation with you about your caring role and how it is affecting you.
The support they offer includes information, advice, guidance, emotional support, replacement care, programmes and workshops, and an online community where you can chat to other family carers to support each other by sharing information and advice.
Visit the Suffolk Family Carers website for more information including a LiveChat facility:
- suffolkfamilycarers.org.uk Tel: 01473 835477
East Suffolk and North Essex NHS Foundation Trust (ESNEFT)
Workers from Suffolk Family Carers provide a key point of contact to support you whilst the person you care for is in hospital and when they are discharged.
Carers are also invited to drop-in to the ‘Carers’ Cabin’ at Ipswich Hospital for respite, emotional support, information, signposts and referral.
Visit the ESNEFT website for more information:
NHS Ipswich and East Suffolk Clinical Commissioning Group (IESCCG)
The IESCCG website provides carers support information on their website including advice for young carers:
Local carer support groups
Suffolk InfoLink is an online directory of community information created by Suffolk County Council. It provides a platform for local clubs, societies, community and voluntary organisations, and public service providers to inform local communities about the support they offer.
You can share contact details of any of the directory entries with someone else by entering their mobile phone number and clicking ‘Send SMS’. The Short Message Service will send the contact details to their phone immediately: