Written by members of PF Warriors who are caregivers, family and friends, this guide is full of practical information. We hope it helps answer some of the questions that you have about how to care for someone with pulmonary fibrosis. Select a button below to read the guide online or download a print version.
Caregiver’s Guide to Living with Pulmonary Fibrosis
Being a caregiver for someone who is living with pulmonary fibrosis is different than caring for an aging parent or a sick child. This is a role that many partners, family members, and close friends are not prepared for. Soon after someone close to you is diagnosed with pulmonary fibrosis, you may ask yourself “what does this mean?” That question and others beg to be answered.
Caregivers have told researchers that one of their greatest needs is for information. Caregivers have many of the same questions as patients. Caregivers want information about the disease, its prognosis, treatment options and what to expect. But they also have additional questions. Caregivers want to know how to define their role, how to provide support and improve the quality of life, and how to keep the relationship healthy. Additionally, caregivers want to know how to make life better for their loved one, when to worry, and how to take care of themselves while taking care of another.
Pulmonary fibrosis can be progressive, meaning that questions continue to emerge if and when the disease progresses. Caregivers may at some point have questions about the quality of life, use of supplemental oxygen, practicalities of living including travel, and minimizing the risk of infections. Patients and caregivers need different information at different stages of the disease.
This guide is designed to be read more than once. Instead, we think it is a guide you can keep on hand and refer to more than once as you grow in the role of family, friend, and caregiver. This guide is one tool we hope you find helpful.
Photo with permission of Anotnia J.