It is not always clear how you can help someone with pulmonary fibrosis. It is a disease that is very stressful and a diagnosis can be difficult on family, friends and caregivers. Here are some ways you can support a loved one diagnosed with PF.
It is important that pulmonary fibrosis patients maintain a sense of independence. Resist the urge to do everything for them. Instead, talk about where you can help and where you need to step back.
A diagnosis of pulmonary fibrosis will stir up many emotions. Patients may feel angry, depressed and anxious. It is common for patients to feel like they are losing part of their identity because they might not be able to do what they did before. It can be very reassuring to tell your loved one that you are there for them and will support them through this difficult time.
Lean on Others
Most people want to help you and your family—they just don't know how. Take advantage of the support people offer so you can get a break from caregiving. Ask people to drop off meals, assist with errands or even just spend some time with your loved one so you can enjoy some personal time. Use tools like the Lung Association's Caregiving Community to update your loved ones and organize their help.
Be Your Loved One's Eyes and Ears
Your loved one might feel too overwhelmed during doctors' appointments to ask the right questions and understand everything the doctor says. As a caregiver, your role in helping the patient stay organized is invaluable. Take good notes, ask questions and even request an appointment just for you and the doctor if there are things you'd like to discuss outside of the normal appointment time.
Encourage Your Loved One to Seek Palliative Care
Palliative care, sometimes known as supportive care, helps patients feel their best, physically and emotionally, during treatment. It's often misunderstood as care only given at the end of life, but palliative care is recommended at the start of treatment. Help your loved one connect with palliative care so they can manage their side effects.
Think about the Future
It is important for the patient to think about what needs to happen so they can continue to get the care they need and want in the future and as their disease progresses. As a caregiver, you can help start these important conversations and assist with filling out paperwork, including an advance directive.
Page last updated: November 17, 2022