Caring can be very rewarding, but it can also be hard work and stressful. It can be a confusing time, with lots of information to take in and unexpected changes to deal with. Make sure health and social care professionals know you are a carer. You are part of the care team and it is important you receive the information, help and support you need.
Do I have to be a carer?
It may seem like you have no choice because of your family situation or a relationship. However, you have the right to decide the extent of your role as a carer.
Many people feel guilty if they don’t want to be a carer. Some people feel that asking for help means they can’t cope, but there is nothing wrong with making sure the person you look after receives the best care possible.
There might be some tasks that you aren’t comfortable with, such as helping the person you care for to wash or use the toilet. You may find it easier if the person you are caring for moves into a nursing or residential home. There, you can still provide care, but with added support.
You can talk to anyone at Dorothy House, or a social worker or district nurse in the community about your choices. And before making any decisions, talk through the options with everyone involved, including the person you’re caring for.
What to expect from a carer's assessment
As a carer, you’re entitled to a carer’s assessment from your local authority. This is an opportunity for you to talk about the care you provide and the impact it has on your life. The assessor will look at the support you get and whether other services could help you. They’ll also advise you on any benefits you’re entitled to and other sources of help.
The assessment should take place somewhere convenient, such as at your home. You can ask to talk to the assessor without the person you care for being present. Tell them what would help you, and be honest about the amount of care you can give. The assessment will also take your interests, work and other responsibilities into consideration. Don’t be shy about asking for help to pay for services; they will help you to understand what benefits you are entitled to.
Caring for someone at home
As a carer, you can talk to anyone at Dorothy House or to your GP, district nurse, health visitor, social worker or hospital staff about what help you can get at home.
If you provide hands-on care, you may need information and advice about lifting and moving the person you care for, helping them to wash, understanding what they can eat, side effects of medication and how to recognise new symptoms.
Practical support from professionals can include information about the illness, planning ahead in the event of an emergency (such as if you were taken ill) and support for you so that you can have a break from caring for a few hours each week.
Make sure you ask questions; there’s a lot to take in so don’t be afraid to make notes and ask the same question several times.
Courses, groups and services for carer support
Other carers are a great source of information, support and advice. So, to help you tap into this we host regular group meetings for carers so that you can meet with others who are going through similar experiences.
This is a 5-week course, run by Dorothy House Nurse Specialists, and is designed to help you feel more prepared and confident in your role. The course aims to provide practical information and advice, explores the emotional impact of caring for someone who has a life-limiting illness and offers, and support and help to you so that you are in the best place to look after others.
The Dorothy House Spiritual Care Team is happy to talk to any patients or carers at Dorothy House.
24hr Advice Line
Patients and carers can ring the 24hr Advice Line for patient care and advice on 0345 0130 555.
Volunteer Companions visit patients at home, once a week, usually for 2-3 hours, and help them with little things that make a big difference. This could involve going for walks, taking them to do shopping, light household tasks, support with gardening or simply having a chat. Companions can also visit so that carers can have a break.
The Dorothy House Hospice at Home team can provide overnight care for patients who are approaching the end of their lives.
You may know a young person who helps with care. There are specific organisations which support young people, offer social activities, respite and the chance to meet someone to talk to. If you know a young carer who might appreciate some help, please call our Clinical Coordination Centre or talk to one of the organisations below:
B&NES Carers Centre – Young Carers Services
0800 038 8885 and 01761 431 388
Somerset Young Carers Project
0845 345 9122
Wiltshire Young Carers
01380 720 671
Top tips for looking after yourself
Don’t ignore stress
Signs of stress may include loss of self esteem, lack of concentration, exhaustion or even hostility towards the person you care for. If you feel stressed, it’s important to seek advice and support. Contact your GP surgery and tell the practice you are a carer. Additionally, the Family Support Team at Dorothy House will also support you or refer you to the most appropriate service.
Ask for help
Other carers are a great source of information, support and advice. You can meet other carers at one of the groups we run, including our Carers Courses and the Carers Support Group
Take a break
Without an occasional break from caring, you can become exhausted or unwell. A break will give you time to do things you may not be able to do while you’re caring, such as catching up with friends and family or having a rest.
If you need to arrange temporary care for the person you’re looking after, your local social services department may be able to organise care in the home, visits to a daycare centre, or a short stay in a care home. It may also be possible to access some form of respite at Dorothy House or in the patient’s own home; the Dorothy House Nurse Specialist will usually assess for this. Just make sure anyone who takes over from you has all the information they need; leave notes about anything important (such as medication and diet) and tell them who to contact in an emergency.
Learn from those who’ve gone before you
Over the years we’ve collated a short list of the best pieces of advice from carers. Implementing just one of these tips might make a big difference to your day!
- Cook double portions – these will come in handy when you’re tempted to skip a meal
- Take regular exercise – even a short walk will help to clear your head
- If you need to visit a GP, make separate appointments for yourself and the person you care for
- Make time for your own interests
- Be realistic – prioritise tasks and only focus on what you can achieve
- If you’re offered help, accept it.