Caring has been described as a ‘constant journey of discovery and understanding’. Caring brings challenges: responding to the changing needs of those who you are caring for whilst navigating your way through the labyrinth to access health and care services.
Getting a Diagnosis
Caring often begins for many people upon a formal diagnosis of a long-term health condition (both expected and unexpected) and is usually given by a health professional. For others, they can find themselves caring without a diagnosis, living with the frustration this can bring in not always being able to access services and support and receive the same recognition. There are organisations that can often help you understand what the diagnosis means for you and your family.
Coming to Terms
Coming to terms with what can often be ‘life-changing news’ can be very difficult. People cope with this in different ways; there is no right or wrong. You may feel a sense of loss or anger and go through a period of adjustment which may require changing your aspirations and hopes for the future. For some, a diagnosis or realisation that things have changed can bring them closer to those that they care for. There are services (e.g. Counselling through Carers Matter Norfolk) that can help you understand how to process this information and cope.
Balancing Work & Caring
Trying to balance the demands of caring and working or education can be challenging. Carers have a number of employment rights, including the right to request flexible working, time off for dependents, parental leave (parent carers) and annual leave. You may wish to discuss your situation with your employer; do they have a carer policy?
Support from your Health Team
Your cared-for may require specialist healthcare support. Complex healthcare needs can be demanding, involving health and social care professionals from many different organisations. It’s important to keep a record of everyone who’s involved; their name, organisation, role and contact details. Your healthcare team can support you too and should be concerned about your needs; they might refer you to a local carers support organisation, such as Carers Matter Norfolk.
Care in the Hospital
The person or people that you care for might require hospital treatment short-term (e.g. if their needs deteriorate suddenly) or long-term to manage their condition. You can contact the hospital’s Patient Advice Liaison Service (PALS) for information on what services are provided, the different departments you might encounter, support for carers (e.g. Carers Passport giving access to free or lower cost food in the hospital restaurant) and arrangements for visiting times and parking.
Services in the Community
There is lots of information, advice and support available in your local community, ranging from carers peer support groups and events to one-to-one support from Carers Matter Norfolk and others to local health and care agencies. Look at the Norfolk Directory here which is being updated constantly or the Local Offer here for parent carers of disabled children and young people.
Support at Home
You may need support to manage at home. The person or people that you care for may require aids or adaptations to help them move around safely at home (find out more here) or more structural work (means tested grants available) may be required. Assistive Technology might also help you keep your cared-for safe and independent at home.
You are not alone – there is a community of carers that offer peer support via Carers Groups or online. Sometimes you might need some encouragement or a bit of support to get through a difficult time. Carers Matter Norfolk can provide you with one-to-one individual support by phone, in person or online, accessing services and support for you or your cared-for, identifying practical strategies for coping with the demands of the caring role.
Transition to Adult Services
For young people with care and support needs and their parents, the transition from Children’s to Adult Services can be a challenging time fraught with difficulties. It’s best to start planning early; the Care Act (2014) says that this would be at the age of 14 for children with Education, Health and Care Plans. Consult the Local Offer here for more information. You could also access information, advice and peer support from Family Voice Norfolk.
Living life to the full
Caring can also have positive aspects, from friends made through Carers Peer Support Groups, to bringing you closer to the people you care for and your wider family. No one person’s experience of caring is the same and there is no right or wrong approach or way of coping with its challenges. It’s important for you and those you care for to remain as active as possible and to develop and maintain personal and community networks. Active Norfolk has information on physical activities across the county that promote positive wellbeing e.g. health walks.
Your Life after Caring
For a variety of different reasons, the caring role can end, for example, the person you care for passes away. You might be a parent and the young person you care-for moves to independent living. These transitions can be very difficult, and you may feel that you’d like to talk with someone. Caring can be a consuming way of life with carers often putting the needs of those they care for first, so it can take time to find yourself again once the caring role ends. It’s important to keep busy and attend to your own needs.
With great thanks to Doug Morris (Chairman of Swindon Parents and Carers Advisory Group) for sharing with us and granting us use of the Carers Journey, which we appreciate having use of to support carers in Norfolk. https://www.swindoncarers.org.uk/parent-carers/