How to care for someone with a lung condition

A carer is someone who regularly gives unpaid care and support to someone else.  This could be someone with a disability, an illness, or a long-term health condition.  

Carers often help with all parts of someone’s life, from personal care like washing and dressing, to supporting someone’s emotional wellbeing.

Over time, carers often become experts in the health condition of the person they care for.   
Carers can often notice changes, both physical and emotional, before healthcare professionals, or even other family members.  

If you’re new to caring for someone with a lung condition, it may help you to find out more about their condition.

Whatever their lung condition, make sure you’re able to get the support you need to help the person you care for to manage their condition well. Ask their doctors and healthcare team for advice.

• Take a list of any questions you have to appointments with the GP or other healthcare professionals.
• Talk through action plans so you’re confident knowing what to do if symptoms get worse, including what medicines you may need to give the person you care for.
• If they use inhalers, ask about the best way to use them.  You can also help check their inhaler technique by watching our short inhaler videos.
• Ask about any specialist help the person you care for may need, including physiotherapists, dietitians, occupational therapists, or oxygen nurses.
   

"I very quickly learned that there is so much complexity to this illness and that no one person follows the same path. I live my life constantly watching for any changes in his breathing, his skin and his appetite" Maxine

Caring for someone living with a lung condition might mean:

• helping them with washing and dressing, eating and taking medicines
• cooking, cleaning and food shopping
• supporting them with medical appointments , like routine reviews,  vaccination and booster appointments,  or pulmonary rehabilitation sessions
• encouraging them to stay active as much as they can
• helping them to manage breathlessness
• making sure they’re eating well and keeping a healthy weight
• encouraging them to stop smoking
• being there to listen to them and encouraging them to speak to their GP, nurse or pharmacist if you feel they need extra support for their emotional health and wellbeing.   
   

When you’re not the only carer

Sometimes you’re not the only person caring for someone. You may need to communicate regularly with other people, like friends and family, who have caring responsibilities too.

Keeping people up to date, or keeping track of important messages and dates, can sometimes be challenging.

The Jointly app, created by Carers UK, is designed to make the job easier. As well as messaging, you can keep notes, make lists, create calendar events, keep track of medication, and create a useful contacts list. 
 

“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

Caring for someone who gets breathless 

Feeling breathless is frightening and stressful, and some people feel embarrassed by how they feel.  Breathlessness makes it harder to do everyday things.

Seeing someone struggling to breathe can be upsetting for you as the carer, too.

Here are some things you can do to help you support someone who lives with breathlessness:

• Agree ways to communicate when someone is feeling very breathless and finds it hard to speak. 
• Talk through the plans for the day and allow time for rest before and after any activities.
• Think about the best time of day to do certain activities, when they’re less likely to feel breathless. 
• Find helpful ways to do things that are less likely to make them breathless, like sitting down to wash or prepare meals, or using a towelling robe after a shower to dry off.
• Encourage them to breathe out when they feel breathless, using pursed lip breathing. This helps create more space for the next breath in.
• Suggest different positions that might help them, like leaning forward onto a chair or rail, or leaning back against a wall.
• Avoid stress or anxiety as much as possible, as these can trigger breathlessness.
• Use a hand-held fan to cool them during episodes of breathlessness.
• Ask their doctor or healthcare team if a referral to pulmonary rehabilitation or to a respiratory physiotherapist could help their breathing , help them learn breathing techniques, and clear their airways of mucus. 
   

Supporting someone to keep active

Encourage the person you care for to keep as active as possible. This might not always feel like an easy thing to do if they often feel breathless. But it is worth trying, because keeping active has lots of benefits. Many people with a long-term lung condition find that exercise can help them manage their condition, build their confidence, improve their quality of life, and boost their mood.

“Sometimes I see people in the exercise class who are scared of getting breathless. But it’s important they keep exercising – and their carers encourage them to.” Dave 

There are lots of ways you can encourage the person you care for to stay active:

• Find some activities you can do together, like going for a short walk. It can be really helpful to do things together, so you can see how breathless someone is getting.
• Find out more about pulmonary rehabilitation. PR also includes chair-based exercises.
• Singing can improve feelings of shortness of breath, help control breathing and help someone to manage symptoms better.

We have plenty of resources to help you keep active, including our exercise handbook and online exercise videos. Take a look at our keeping active information for more ways to stay active.
 

Encourage healthy eating 

It’s important that the person you’re caring for has a healthy, well-balanced diet with a wide range of foods from all five food groups.  
You could encourage healthy eating by making it a shared activity. For example: 

• Make a shopping list together, so you can plan to buy ingredients for healthy meals and snacks
• Go to the supermarket together, if this is possible. Shopping is a chance to get a bit of exercise and activity into the day.
• Eat meals together

The NHS Eatwell guide shows how much we need to eat from each of the five food groups.
 

Giving emotional support  

As a carer, you can often find yourself giving emotional support.

As well as physical symptoms, like getting out of breath and feeling tired,  living with a long-term health condition can also affect mental health. It’s common for some people living with a lung condition to get stressed, anxious or depressed.  

Here are some tips to help the person you care for if they’re feeling down :  

• Be a good listener. Let them know you care and are there to listen, without judgement.
• Reassure them, and talk them through breathing calmly and slowly if they’re stressed or panicking.
• Help them to stay in touch with friends and family, or to connect with others online if they feel isolated.
• Encourage them to keep active – physical activity has been shown to help with low mood and depression.
• Eating healthy foods can help avoid a low mood,  and help people feel less anxious.
• Getting outside can be a great way to boost someone’s mood, especially if you’re able to be in nature,  like the countryside or a park.
• Speak to your GP, nurse or pharmacist, or find other sources of support, such as psychological therapy or support groups. 

It’s important to make sure you’re looking after your own mental wellbeing, too.

Find out more about anxiety, panic attacks and breathlessness.

Protecting from infections 

If you look after someone with a lung condition, it’s important to try to help them avoid getting a chest infection. Chest infections can cause their symptoms to suddenly get worse.

Colds, flu, and the coronavirus spread very easily, particularly during colder months. As a carer :

• Let your GP know you’re a carer so you can get a free flu jab each year, the COVID-19 vaccine, and the one-off pneumonia vaccine
• The person you’re caring for will also be eligible for these free vaccines, so book an appointment for them, too. 
• Try to avoid contact with anyone who you know has a cold or another illness, weighing up the benefits of going out and meeting other people against the risk of getting an infection
• Always wash your hands with soap and water when you come home, and use an antibacterial hand sanitiser when you’re out and about
• Always cover your nose and mouth with a tissue when you cough or sneeze
• Wear a mask if you have a cough or a cold, but still need to be there to care.
   

What if the person I care for suddenly gets worse?

It can be scary  when someone’s symptoms get suddenly worse.

Whatever the condition of the person you care for, it can help you feel more confident if you’re prepared:.

• Ask their GP, nurse or other healthcare professional what symptoms to look out for and what you need to do.
• Talk through their action plan if they have one, so you know signs to look out for, what action to take, and when to call 999. Action plans are recommended for conditions like asthma , COPD  and bronchiectasis  where symptoms can get worse quickly.
• Make sure you understand any medicines they need to take when symptoms get worse, including any rescue medicines you’ve been given to keep at home, as a ‘rescue pack’. Keep these somewhere that is quick and easy to get to.

Self-management help:  

• Asthma action plans
• Spotting signs of a bronchiectasis flare-up 
• COPD self-management plan 
• Pulmonary fibrosis – questions to ask

People living with lung conditions and breathlessness can sometimes benefit from helpful equipment at home.

For example, the person you care for may benefit from things like :

• Wheeled trollies to move small items around the house. 
• Bath cushions and shower seats to make washing more comfortable. 
• Ramps for wheelchairs, if needed.  
• Stairlifts if they’re too breathless for walking up the stairs.  
• Raised toilet seats to help you get on and off the toilet easier.  
• Commodes (a seat with a hidden toilet) if getting to the bathroom is difficult.    

Carers UK has lots of examples of different types of equipment that can help around the house.

They also list different types of technologies that can help some people with long-term conditions, like voice-activated devices, electronic door locks, and special phones.

“Sue used a wheeled trolley to help her carry things round the house. We got reclining chairs too.” John
 

How can I get the equipment? 

• You can ask for a needs assessment. This is provided free from your local council or trust. It finds out what help you might need, and how you can get extra support, including equipment you might need.
• If you live in England or Wales, you may be able to apply for a home assessment.
• You may also be eligible for a grant, or you could hire or loan the equipment.
• Independence at Home has useful information about grants
• Living Made Easy provides help with finding equipment.  
   

Planning for the final stages of caring can be very difficult. Have a look at our advice on thinking and planning ahead. It covers what you can expect if the person you care for is reaching the end of their life, and what you might need to do. This includes planning end of life care and putting their affairs in order. 

Making difficult decisions

You may want to think about a lasting power of attorney covering health and welfare . If the person you care for nominates you, you will be able to tell their healthcare professionals about their wishes and be able to make decisions on their behalf, if they can’t.

You might also want to talk to healthcare professionals about the options available locally, such as helping you care at home and care in a hospice or hospital.

Palliative care specialists can give support with controlling symptoms and improving the quality of life for the person, their family, and carers at any stage of their condition.
 

When caring ends

Your caring role is likely to change over time, and it is hard to adjust when it comes to an end. Read more about caring for a loved one at the end of life.
When the person you care for dies, your feelings and reactions will be unique to you. Whatever you’re feeling, a range of support is available:

• Hospice UK has support if you’ve been bereaved.
• Carers UK has advice and support for life after caring