Carers
Family and friends often spend lots of time supporting their loved ones. In this role, they may be referred to as a ‘carer’. Carers may help in many ways:
Helping around the house
Assisting with personal care, such as showering and meals
Providing emotional support
And much more
Being a carer can be rewarding but can also be challenging. Some carers may find their own health and wellbeing suffering, and benefit from recognition and support.
Specific information and support for carers is important. The information on this website is designed to help you to feel confident to manage breathlessness at home and respond to your loved one’s needs.
How can carers help?
Learn. Support independence. Keep active.
Carers may find it helpful to learn about breathlessness and simple strategies to ease breathlessness at home:
Staying active
When someone is very breathless it can be tempting to take over and do everything for them. However, it is important for people with breathlessness to try to stay active and be independent. This might mean encouraging people with breathlessness to move slower, take regular breaks, or use walking aids. Getting up and about boosts fitness and mood (Breathing Thinking Functioning Model).
What if breathlessness worsens? When should I worry?
Stay calm. Reassure and remind. Know when to seek help.
Worsening breathlessness can be frightening and distressing to witness. Try to stay calm. Remember to use the breathlessness strategies on this website.
A breathlessness management plan can give you confidence to support your loved one’s breathlessness at home.
If you are very concerned it is important to seek help from your local health professional team. Know who to contact when you are concerned (e.g., increased breathlessness or cough, deterioration in function, drowsiness).
Remember that breathlessness is not harmful and will recover with rest. Here are some effective strategies that may be useful when your loved one is breathless or frightened:
Support and encourage your loved one to use the breathing techniques that they find helpful. Relax the shoulders, focus on breathing out rather than in, count to control breathing, imagine breathing around a rectangle, pursed lip breathing, relaxed tummy breathing, positions to ease breathing, handheld fan to move air on the face.
Offer reassurance and encouragement.
Try relaxation and distraction techniques. Listen to music, read a book, watch TV, meditate…
Use medications prescribed by your health care team and know how to use them.
If these techniques are a routine part of your day, they can be easier to use in times of distress.
What about me?
Look after yourself.
People with breathlessness can rely on carers for a long time. You may tend to put your loved one’s needs before your own, but both are important.
Speak to the healthcare team looking after your loved one so you are acknowledged, involved and supported.
Have your own trusted health professional team for your physical and mental wellbeing.
Take time to relax, stay active, and still do things you enjoy each day. Plan time in the week so this is not skipped.
Try to be social and connected. It can be helpful to talk about your concerns and frustrations.
Don’t be afraid to seek help. This could be from friends and family, or formal support services including additional carers, meal services, cleaners and financial supports.
And the future?
Talk. Plan. Be open and honest.
Life is likely to be challenging and maybe shorter living with a chronic illness. The future is uncertain and can be frightening. For some people talking about the future with family, friends, and health professionals can ease concerns. There are many things you may want to discuss:
What happens when things get worse
Frightening thoughts about dying.
Expected illness trajectory.
Involvement of palliative care – when a disease cannot be cured, palliative care can improve quality of life. It is not just about dying. It helps control symptoms, increase access to services, provide emotional support to you and your loved one, and guide difficult decision making.
Your loved one’s future goals and treatment preferences – these discussions give control to your loved one before they deteriorate and allow their final wishes to be respected. Planning also reduces future stress and pressure on you, as their carer, to make these tough decisions. An advanced care directive formalises this.