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Living with pulmonary fibrosis

Carer support

Carer resources

While it can be personally fulfilling to care for someone with pulmonary fibrosis, it can also be both mentally and physically exhausting. You may face many challenges and need to consider things you never have before.1


Issues that may arise:

  • What support is available for you as you provide care from home
  • Understanding the differences between supportive care and end-of-life care
  • Legal and financial matters you have never had to deal with before
  • What support is available to help you cope with the emotional challenges of being a carer

While caring for somebody with pulmonary fibrosis, don’t forget to look after your own well-being. When you are healthy, you can be a better help to them.

Watch the video below to see how Olivia's experience has shown her what kind of doctor she wants to be.

Connecting with other carers

A carer support group is a meeting of people who are caring or have cared for a loved one with a serious condition. Family and friends of people with pulmonary fibrosis can share their feelings, needs, and concerns, which can help you navigate your own experience. Carer support groups can also provide advice and help you with the mental and practical challenges of providing care to a loved one.1,2

Support groups may be organised by different people depending on where you live. Hospitals, charities, and hospices may all arrange carer support groups. If you know other caregivers, perhaps consider setting up your own support network. You could use messaging apps to create group conversations to share tips and support. Just be careful when disclosing any personal details online.

Speaking to others about pulmonary fibrosis and your role as carer

One of the most important steps to take, once you are ready, is to speak to those close to you about your loved one living with pulmonary fibrosis, and how you are coping in your role as a carer for them.

These tips might help as a guide to start the conversation with those close to you:
  • Communicate in a way that makes you comfortable: This might be a face-to-face conversation, or you may find it easier to talk on the phone
  • Choose a calm moment: There is no ‘good’ time to share this news, but it can help to find somewhere quiet where you are unlikely to be disturbed
  • Practice what you want to say: You could do this in your head or make some notes. Consider phrases like, ‘This isn’t going to be easy, but I need to tell you something’, or ‘I’m finding it hard to cope at the moment’
  • Share information to help them understand: If you’ve found a useful description of pulmonary fibrosis, use it to help explain what your loved one’s diagnosis means and how it affects you

You're not alone as you navigate this journey. Patient advocacy groups are a great place to find support and your treatment team (or a quick internet search) can help you find one.

Supportive care

Palliative care, often referred to as supportive care, is a type of health care for patients and their families facing life-limiting illnesses. It can provide support for you and help your loved one live with a serious illness comfortably.3

What does palliative care involve?

Palliative care focusses on providing your loved one with relief from symptoms, as well as support for the physical and mental stresses of living with a serious illness.3

Palliative care teams are made up of multidisciplinary healthcare professionals, which may include doctors, nurses, social workers, and home health aides. The palliative care team works together with your loved one’s treatment team to provide an extra layer of support. They are always careful to consider the unique needs of both you and your loved one so treatments are tailored to consider your physical, emotional, social, and cultural needs.3,4

In pulmonary fibrosis, palliative care is especially
important. For progressive pulmonary fibrosis conditions, management changes over time. As the condition progresses, managing symptoms becomes very important. Palliative care can give you access to what you need to help with this and aims to improve your life in both the short and long term.

Your loved one can choose to receive palliative care in different locations. For example, this can be provided5:

  • At home
  • In a care home
  • In a hospital
  • In a hospice
Supportive care

Where palliative care takes place is a personal decision which should be discussed with your loved one, any other carers, and treatment team.

Those involved in providing care for loved ones living with pulmonary fibrosis have unique needs of their own. Family members and friends of those with pulmonary fibrosis should seek tailored support to meet their physical, emotional, and spiritual needs. These services may include:

Referrals to local support groups and counselling services

Advice and training on the use of supplies and equipment

Carer advice, legal documents, and support for managing practical challenges (eg, finances, insurance matters)

Access to respite care, if you need to take a break from your daily tasks

Your loved one’s treatment team should be your first point of contact to discuss palliative care. Palliative care should begin upon your loved one receiving a diagnosis and continue alongside other treatments. This way, you, your loved one, and family members have a support system in place right from the beginning.

Try to begin conversations about supportive/palliative care with your loved one and their treatment team as early as possible. Putting plans in place can help ease your mind and allow you to focus on spending quality time doing things you enjoy with your loved one.
Power of attorney

Power of attorney

A power of attorney is a legal document that allows you to represent your loved one and make decisions based on their behalf. A power of attorney is a type of advance directive, which means that your loved one can provide instructions for their future if they lose the ability to make them.6 Putting it in place can give your loved one peace of mind knowing that someone they trust is in charge of their affairs.

Typical decisions you may be allowed to make as part 
of an advance directive may include7:

  • What type of medical treatment the person receives
  • Whether or not they need further care
  • Day-to-day choices (eg, their diet)

As part of the power of attorney, your loved one can also authorise you to help manage financial affairs. This can involve the payment of bills and can also be set up for a temporary period, such as when they’re in the hospital.

Your loved one’s preferences may change over time. It can be helpful to encourage conversations with them around this and see if they would like to update the documents.

Quick tip

You can support your loved one by helping them fill out the forms involved in setting up a power of attorney or consult a solicitor/lawyer to assist you.

End-of-life care

End-of-life care describes the type of specialty support available for people who are in the final stages of their life.8 The aim of end-of-life care is to help people maintain their dignity and live as comfortably as possible until they pass away. It is vitally important that the patient’s wishes are considered, from the start of end-of-life care until the end. This includes answering the patient’s emotional and cultural needs. Throughout the process, the patient’s family or carers will also be offered physical, emotional, and spiritual support.

Who provides end-of-life care?

Your treatment team will talk to you and the patient to discuss and develop an end-of-life care plan. Different health and social care professionals may be involved in end-of-life care, depending on the patient’s needs. For example, care can involve hospital doctors and nurses, hospice staff, counsellors, and occupational therapists.

If care is being provided at home or in a care home, the patient’s doctor has overall responsibility for their care. Community nurses may make regular visits to your home, and family or friends will be fully involved in the process to help coordinate the best care for the patient.

Talking about end-of-life care

When you feel ready to approach the topic of end-of-life care, speak openly with your loved one and their treatment team. They are experienced in helping patients and carers through end-of-life care, while always being sensitive to the unique needs of each patient.

Suggestions that may help

Start the conversation early9 

When they feel ready, make sure that your loved one has the opportunity to express their wishes about how they would like to receive care

Be open 

Keep open conversations with your loved one. Their desires for end-of-life care may be different from what you expect. It is important that your loved one receives care that meets their needs

Find a support group8

Maintaining a sense of hope for the future will help you focus on looking after your physical and mental well-being. You may find hope from members of a support group—and in turn, you may one day provide hope for someone else

What to expect in the last few days10

As the person approaches the end of their life, you may start to notice changes in their symptoms. Not everyone will experience the same symptoms or all of them. The changes might be apparent over weeks, days, or even hours:

Signs that someone is approaching the end of life10:

  • Not wanting to eat or drink—Decreased appetite for food or liquids; swallowing may become difficult
  • Losing physical energy—The ability or desire to talk, 
and signs of withdrawing from family and friends
  • Feeling sleepy or drowsy—Being very inactive most of the time, many times becoming unconscious. Often, patients will want to stay in bed or a comfortable chair rather than getting up
  • Changes in breathing rate or pattern that are out of the ordinary—As the body becomes less active, the need for oxygen reduces. There may be long pauses between breaths and the stomach may move up and down more than the chest
  • Changes in skin colour and temperature—Skin may become pale, clammy, and slightly cooler
  • Involuntary twitches—These are normal and do not mean that someone is distressed or uncomfortable
End-of-life care

Never cope alone

A loved one passing away is often one of the most difficult periods in a family member or friend’s life. It is important to spend time with family 
and friends to remember your loved one and support each other through the grief process.

Abbreviations: ILD, interstitial lung disease; IPF, idiopathic pulmonary fibrosis; PF, pulmonary fibrosis; RA-ILD, rheumatoid arthritis-associated interstitial lung disease.

  1. Belkin A, Albright K, Swigris JJ, et al. A qualitative study of informal caregivers’ perspectives on the effects of idiopathic pulmonary fibrosis. BMJ Open Respir Res. 2014;1(1):e000007.

  2. Mayo Clinic. Support groups: make connections, get help. March 16, 2023. Accessed October 2, 2024. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/support-groups/art-20044655

  3. Pulmonary Fibrosis News. Understanding palliative care. December 5, 2017. Accessed October 2, 2024. https://pulmonaryfibrosisnews.com/2017/12/05/pulmonary-fibrosis-understanding-palliative-care/

  4. Marie Curie. What is palliative care? August 10, 2022. Accessed October 2, 2024. https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care

  5. National Health Service. Choosing where you have end of life care. Updated May 12, 2022. Accessed October 2, 2024. https://www.nhs.uk/conditions/end-of-life-care/where-you-can-receive-care/

  6. Luck T, Rodriguez FS, Wiese B, et al. Advance directives and power of attorney for health care in the oldest-old - results of the AgeQualiDe study. BMC Geriatr. 2017;17(1):85.

  7. National Health Service. Giving someone power of attorney. Updated May 13, 2024. Accessed October 2, 2024. https://www.nhs.uk/conditions/social-care-and-support/lasting-power-of-attorney

  8. Lewis D, Scullion J. Palliative and end-of-life care for patients with idiopathic pulmonary fibrosis: challenges and dilemmas. Int J Palliat Nurs. 2012;18(7):331-337.

  9. Bajwah S, Koffman J, Higginson IJ, et al. ‘I wish I knew more ...’ the end-of-life planning and information needs for end-stage fibrotic interstitial lung disease: views of patients, carers and health professionals. BMJ Support Palliat Care. 2013;3(1):84-90.

  10. Asthma and Lung UK. Physical signs of dying. Updated June 10, 2024. Accessed October 2, 2024. https://www.blf.org.uk/support-for-you/end-of-life/physical-signs