Tips from other carers
These tips come from people who are, or have been, carers. Here they share their experiences and pass on things they would like to have known as they started caring for someone.
On this page:
- Get help and build a support network
- Get the right advice quickly
- Don’t be afraid to ask for more help
- Look after yourself and your emotions
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.
Caring responsibilities vary for so many people. When my Dad was living with IPF, my mum was the primary carer because she lived with him, but she still worked. Me and my siblings spoke to our employers and were fortunate to have compassionate leave granted to help with caring for our Dad. We were also very lucky to have friends help and take the weight off my mum’s shoulders. Our local hospice was also very helpful – they would take Dad once a week to participate in day-long sessions that included activities like painting and drawing, and even head massages. Kellie
Chat to everyone locally and ask people for help. Try your GP practice nurse and local carers’ organisations. John
Our page on how you can help you’re the person you care for has more information on how to get extra help with caring responsibilities.
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.
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 Asthma + Lung UK support groups are spread across the UK. We also have virtual support groups, which are available to join if there isn’t a local group near you, you can’t travel to the meeting, or you prefer to meet remotely.
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.
Go with a list of questions and wait for answers. Kasim
The person you care for may benefit from specialist help. They may want help from:
- physiotherapists to help with breathing control and ways to keep active
- a dietitian 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 -they can also make minor changes to your home, for example, arranging equipment such as a wheelchair.
Sue used a wheeled trolley to help her carry things round the house. We got reclining chairs too. John
Find out more about further caring support available.
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. 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
We have more information on looking after your health and wellbeing as a carer.
You can also 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.
Look after your own health
It’s important to look after yourself so that 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.
Take time for yourself
Try to find ways to have time for yourself regularly. Ask a friend or 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, like reading and watching films.
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
Sometimes you might need a longer time to recharge your batteries. Our page about support for carers has more information on how to get help with caring and how to help yourself.
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.