How does research change lives?
We’re on a mission to make sure that one day everyone breathes clear air with healthy lungs. That’s why funding research into lung disease is such an important part of what we do.
Tips from other carers
These tips come from people who are, or have been, carers. They wanted to share their experiences and to pass on things they would have liked to have known as they started to care for someone.
They know looking after someone can affect you emotionally, physically and financially. And that it’s important to look after yourself to help you care, maintain your relationship with the person you care for and your work life, if you’re working.
On this page:
- Get help and build a support network
- Get the right advice quickly
- Don’t be afraid to stand up for yourself
- Cope with your feelings
- Look after yourself
Carers told us they had found practical help – in different ways and from different sources. They are always on the lookout for what will help them in their situation.
Chat to everyone locally and ask people for help. Try your GP practice nurse and local carers’ organisations. John
Remember you may be able to get financial and other help from the government or your local council. Make sure you tell your council you are a carer.
Sometimes, you might want to find additional carers. For example, if the person you care for has money which means the local council won’t help with the costs of care even if they agree it’s needed. Carers UK has advice about finding the sort of help you’re after.
Also think how doing tasks in other ways could make your life easier. For example, you can book GP appointments and order repeat prescriptions online.
Building up a support network can make a big difference. Think about the kind of help you might need from your family, friends and neighbours. And involve the person you care for in thinking about who can help.
The Jointly app
Carers UK has an app designed for carers by carers. The Jointly app means you can communicate easily with everyone who shares the care of the person you look after.
Caring can be very complicated – finding out about a specific lung condition, how it’s treated and managed and what help you can get - as well as looking after yourself.
You ask other carers – in person or in online carers forums.
I talk to fellow carers at support groups. I talk to others and get support from the carers Facebook group. That is carers sharing their experiences and giving information.Maxine
Ask about local support groups. Our breathe easy and pulmonary fibrosis support groups are spread across the UK.
Remember our friendly helpline team are there to help you. Call them on 03000 030 555 or email firstname.lastname@example.org
Looking after someone often means dealing with lots of different professionals and organisations. As a carer, you can go along to appointments and ask health care professionals what you want to know. It can be hard to speak up if you feel the professional has not explained things clearly, has not understood the whole situation or has not told you where to get more help. But this is also an important part of caring for someone.
Go with a list of questions and wait for answers. Kasim
Agree a written plan with a health care professional about how to manage the condition of the person you care for and how to deal with flare-ups of their symptoms. Ask if you can have medication to keep at home for an emergency.
You may want to be referred to more specialist help too. You may want help from:
- physiotherapists to help with breathing control and ways to keep active
- dieticians to help with eating well and keeping a healthy weight
- oxygen nurses, if the person you look after has oxygen therapy
- palliative care specialists to focus on controlling symptoms and improving the quality of life for the person, their family and carers at any stage of their condition
- occupational therapists to make sure the person you care for is safe and comfortable at home
Occupational therapists can make minor changes to your home. They can also arrange equipment such as a wheelchair.
Sue used a wheeled trolley to help her carry things round the house. We got reclining chairs too.John
Carers told us that some equipment can make a big difference. Often they had to buy it themselves. But there may be grants and other help available. Have a look at Carers UK’s website about equipment and how to get it.
When you look after someone, you will need to adapt and make changes to your life. It’s hard to watch someone close struggle with shortness of breath or other symptoms. You may feel your life is no longer your own, and frustrated that disease controls your life. It’s normal to feel a lot of different emotions, including worry, guilt and frustration. You have these feelings because you care.
Sometimes my difficulties seem unimportant compared to what he’s going through. It’s all strange. Guilt can be a big part of my feelings, as sometimes I feel torn between caring for him, being there for the rest of my family and keeping on top of my work. I’ve had counselling and that helped.Sita
It’s important to talk to people who understand what you’re going through about how you can handle these feelings. Some people find it helps to talk to family and friends. Some use online forums, like our web community.
But it can also be useful to talk to someone outside your family or support network. Ask your GP, who should be able to refer you to counselling or therapy. You may have to wait for free services.
Get in touch with your local Mind, whose services can include drop-in centres and training, counselling and befriending. Or you can find private counsellors and therapists through the British Association of Counsellors and Psychotherapy.
Caring always involves an element of putting your own needs aside. But it’s important to look after yourself too, so you can keep going as a carer.
Tell your own GP about your caring role and keep up with your own health appointments.
Free flu jab
You and the person you care for will want to avoid flu viruses going around over the winter, so make sure you have a flu jab. Some people with long-term lung conditions, their main carers and people over 65 are entitled to a free flu jab every year.
The NHS also provides a one-off pneumonia vaccination for people with a long-term health condition and people over 65. This protects you from serious forms of pneumococcal infection. Ask your health care professional about this for the person you care for and yourself.
Look after yourself by eating well, keeping active and getting enough sleep. And look after your mental health too – don’t ignore signs you’re getting stressed. Mind has suggestions about how to cope when you’re supporting someone else. Don’t forget to take a break and make time for yourself.
Take time for yourself
Try to find ways to have time for yourself regularly. Ask a friend of family member to take over for a while. Or you might be able to arrange some help in the home for a couple of hours or for the person you care for to visit a day centre.
Try to find a space in every day to relax or do something you enjoy.
You need a little something that’s about you. Once a day I go to the sofa in my study, light a couple of candles and sit quietly for 10 or 15 minutes. Sometimes I can feel the tension ebbing away.Sita
You may want to learn relaxation techniques. Try looking online or your local library may have some CDs or DVDs .
Sometimes you might need a longer time to recharge your batteries. There is help available for this. You may feel that you can no longer go on holiday with the person you care for because of their lung condition. This isn’t always the case. With some forward planning and realistic expectations, you can have a lovely trip.