Carers
In this section
The information below is taken from the Harris HospisCare Home Care information book (PDF) which is given to all patients.
Carers
This section is written for anyone who is providing care or practical, emotional or social support for a partner, relative, or friend with advanced illness living at home.
There are nearly six million carers in the UK providing care unpaid; the Government has been looking at ways of helping carers do what can be a demanding job. Many carers also have paid employment, look after children or other dependent or frail family members.
Many carers find that taking care of someone is an important and fulfilling time in their lives where bonds between people are strengthened. Nonetheless there can be strains and worries, and the following information aims to offer useful advice and sources of support.
Carers have been asked what most concerns them. The most common responses are:
- the danger of overwork and becoming physically exhausted
- the risk of ill-health (back troubles, poor sleep, depression)
- mental strain and anxiety
- stress on family relationships and friendships
- limitations on employment and career
- money worries and
- feelings of isolation, helplessness, sadness – and sometimes regret, anger and guilt.
As a carer you will probably still be coming to terms with the illness and the effects it is having on everyone in the family. Each situation is different and every person has their own way of coping. Illness brings many changes to everyday life and relationships. This can bring you closer to the person you are helping, but it can also be worrying and tiring and you may not know what help is available or who to call.
You may be involved in giving help yourself or arranging for other people to provide help with a wide variety of tasks such as:
- washing and dressing
- getting to bed and to the toilet
- housework, laundry or cooking
- spending more time with the person needing care
- responsibility for paperwork, bills and financial matters
- attending medical or hospital appointments or
- monitoring care being given at home by professional caregivers.
Most carers need help and support at some point so that the best care can continue to be given.
What can help? Who can help?
Having good information about the illness of the person you are caring for and about their treatment
Your Harris nurse, in consultation with the hospice doctors, can provide information, as can the specialist team at your local hospital and your GP. At its best, caring is a partnership between patient, carer(s), and the Harris HospisCare home care team.
Good quality written information is available free from Macmillan and Cancerbackup and from the reception at Caritas House.
Knowing about local sources of practical help with personal care and domestic tasks
Your Harris nurse or social worker can help you contact the various agencies offering these services. Some addresses and telephone numbers are listed in the resources section of the home care information book.
Looking after yourself physically
In concentrating on looking after others we can sometimes start to neglect ourselves. Your health is very important so try to eat well and ask for help if you are having problems sleeping.
Sometimes special aids and equipment provided by community services can bring much physical relief for you and the person you are looking after. Your Harris nurse can advise you as to whom to contact.
Looking after your own emotional health and well-being
Knowing who is there to listen and give support
Taking a break from caring, whether for a few hours, a weekend, or longer
Looking after someone is not always easy and often frustrating. There are times when it will help to talk to someone about how the cared for person’s illness and treatment are affecting you and your life. Having someone you can trust to share some of your thoughts and feelings can lessen your worries and feelings of anxiety. You may have a relative or good friend whom you can trust or you might find it more helpful to talk to someone outside the family circle. This could be the Harris social worker. The hospice also offers the services of a consultant psychiatrist if you need to have more specialist advice.
It is important to continue doing things which give you pleasure and help you to relax. Try to make time for maintaining friendships and social contacts.
Having someone to give help and support when communication between the person you are looking after and with other members of the family, including children, goes through a difficult patch
A serious illness can put strain on family relationships and friendships. Some conversations can be difficult for families.
The Harris social worker is able to spend time with you, with the person you are caring for, and with other family members to help with these.
Leaflets and activity booklets are available to help parents or grandparents talk to any children in the family about what it is like for someone close to them to be ill, and about dying.
Young carers
A young carer is a child or young person under the age of 18 whose life is restricted because of the need to take care of a sick or disabled relative. Young carers take on practical and/or emotional caring responsibilities that would normally be expected of an adult. There are at least 175,000 young carers in the UK.
Some worries of young carers
- Can I catch the illness? Will it happen to me?
- What caused it? Was it my fault? Why us?
- Can I do anything to make him/her better?
- Will he/she get worse or even die?
- Who then will look after me?
- How do I cope with all these difficult feelings?
- If I tell anyone such as my teacher will I go into care?
- What do we do for money?
- What should I do in an emergency?
All of these are normal and common and you may have more.
What can help?
Talk
Talk to some one such as your parents, another family member, your favourite teacher, your friends. This can feel risky but sometimes taking a risk can pay off. Think about whom you can trust. You may want to write down what you would like to say. The Harris social worker could also see you and he/she will understand what you are feeling as they meet many young carers. The Harris nurse will be able to put you in touch. We run some group events for young carers which give you an opportunity to meet other young people in a similar situation. If you are interested in these, please ask your Harris nurse or social worker.
Young Carers Project
At Bromley Young Carers Project you can meet other young carers. The project offers fun days and evenings out and someone to listen. They can also offer information to the rest of your family, for example financial advice.
The internet
Remember it is important to be safe when using chatrooms. Agree rules with your parents about what you can and can’t do on the internet. This will save arguments later. Don’t use your real name or give personal information such as your address or phone number.
Social Services
Carers who are 16 or over have the right to a Carer’s Assessment and some boroughs will assess you if you are younger. This is your opportunity to explain what is happening at home and your worries and to see if you can get more help. You will need to see a social worker or care manager. The person you are caring for may have one or you can ask the Harris social worker or some one else can get the Social Services telephone number from the telephone directory.
School
If your teachers know you are looking after someone at home they may be more under-standing and try to help. Some young carers find it easier if their parent informs the school. It is important the school is aware and it may have a school counsellor you can meet. It may be that you are being bullied as sometimes young carers can be seen as different. No one should put up with bullies.
Looking after yourself
All carers need to re-charge their batteries! What helps you feel less stressed? It may be exercise such as football, drawing (you could draw or paint a picture to show how you feel), listening to music, talking with friends or just being quiet and peaceful.
This information is taken from the Harris HospisCare Home Care information book (PDF) which is given to all patients. An electronic copy can be read online or downloaded from our website here.
