Family and Friends Resources
Spouses, family, and friends want to support their loved ones with fibrotic lung disease but may not know how. Our members have found these resources valuable. We hope you do, too.
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Introduction to Pulmonary Fibrosis
What does a diagnosis of pulmonary fibrosis mean for you and your loved one? These resources explain pulmonary fibrosis, its symptoms, treatments, and what you can expect.
What is IPF?
Learn about IPF from a conversation between a person living with IPF, a caregiver, a pulmonologist and a clinical educator.
PF Warriors Private Group
Join our private group for daily interaction with other members.
Breathlessness is like being underwater
Hear Ann, a person living with PF, describe what her condition feels like.
What is interstitial lung disease?
John Hopkins website has educational information.
Journeys Through Pulmonary Fibrosis
A podcast series aimed at bringing together the inspirational people living with this condition, their carers, and the researchers and doctors working tirelessly to support them.
Educational Resources
Pulmonary Fibrosis Foundation website has information on many topics.
Pulmonary Fibrosis Journey
Kim Fredrickson describes her day-to-day living with pulmonary fibrosis. This is a great read for patients and caregivers looking for ways to cope with pulmonary fibrosis.
When my husband was first diagnosed with IPF, I hated the term caregiver. I wasn’t a caregiver, I was his supporter. As his disease progresses, things change, But I always respect his choices and support his independence. And, I have learned that pulmonary fibrosis is a family affair.
Pat Vick
PF Warrior supporter, caregiverSupporting and Caring for Your Loved One
When supporting someone with lung disease, many challenges may be new to you, even if you have been a caregiver or care partner before. Here are resources to help.
Shelly & Scott
Caregiving can be scary, thankless, and frustrating— just ask Scott and Shelly, who live in Texas. Through it all, however, they remind us that caregiving is an act of love.
Supporting Someone on Oxygen
The American Lung Association website gives supporters a rich look at supplemental oxygen and its consideration.
Caring for Someone with a Lung Condition
The British Lung Foundation provides this short document for downloading. Written specifically for carers.
IPF Caregiver’s Role
As a caregiver, you support your loved one through idiopathic pulmonary fibrosis (IPF). Hear how to get the most out of consultations and treatments from Fight IPF Canada.
Caregiver’s Journey
This guide from National Jewish Health is intended to help IPF caregivers navigate the course of the disease and anticipate challenges that may be encountered along the way.
What is it Like to be a Transplant Caregiver?
Watch as caregivers, patients, and transplant experts describe what it’s like to be a caregiver for a transplant recipient. From Be the Match.
Caregiving 101: Respiratory Disease
Short videos from Senior Helpers NorCal show you how to use equipment for lung disease issues.
Caring for Yourself
When an illness progresses, both patients and care partners experience stress and emotions. As a care partner, you need to care for yourself first.
Guided Meditation for Caregiver Stress
Listen to a free, guided meditation to relieve caregiver stress. If you only have 5 minutes, take 5. From Healthy Journeys.
Recognizing Caregiver Burnout
Caregiver stress and burnout are common. Read about the signs that you may be neglecting yourself. From Compass by WebMD.
Care Partners
PF Warrior caregivers talk about their experiences in this interview.
Surviving Caregiving
As a registered nurse, Lois Moody shares how her family faced the daily struggles from diagnosis of pulmonary fibrosis to release.
Support for IPF Caregivers
The Fight IPF website offers resources for caregivers of people with fibrotic lung diseases such as IPF.
Caring for Someone with IPF
Whether you’re a spouse, a family member, or a close friend, being a caregiver for someone with IPF isn’t easy. From Boehringer Ingelheim.
Patient, Caregiver, Expert Discuss PF
Hear about diagnosis, treatment, and quality of life from pulmonary fibrosis patient Jim Carns, his wife and caregiver Karen Carns, and a pulmonary expert.
Patient, Caregiver, and Provider Relationships
Dr. Kim Gorgens talks about how to create superior relationships among caregivers, patients, and physicians.
Planning for the Future
With a serious illness, the future can be unpredictable. We are better able to handle the future if we prepare for it.
End of Life in IPF
Dr. Meena Kalluri demonstrates the delicate conversations to have about end-of-life care with patients with IPF. From the France Foundation.
End of Life Care in PF
The Life with Pulmonary Fibrosis website offers an overview of end-of-life planning for patients and families.
Palliative Care in PF
People living with PF can find relief with palliative care. Palliative care is different from hospice care and can begin at diagnosis or at the same time as any medical treatment. From the Pulmonary Fibrosis Foundation.
Being Mortal (book)
A practicing surgeon examines the limitations and failures of medical practice as life draws to a close.
Being Mortal (documentary)
How do you talk about death with a dying loved one? Emmy-nominated documentary from Frontline based on the book.
General Care Partner Information (non-disease specific)
Family and friends have many needs that are not specific to fibrotic lung diseases. There is an abundance of caregiver resources available. Here are some that we recommend for you.
Resources for Caregivers
AARP provides a wealth of quality resources for caregivers on the Family Caregiving section of their website.
AARP Family Caregiver Guide
Download this useful guide for information and tips for caregiving.
Caring Bridge
Caring Bridge provides a tool for families to communicate and coordinate events and news for patients, families, and friends.
Written by members of PF Warriors who are caregivers, family, and friends, this guide is full of practical information. Select a button below to read the guide online or download a print version.
Caregiver’s Guide to Living with Pulmonary Fibrosis
Our Contributors
PF Warrior family members and caregivers carefully selected the resources that are shared on this page. Thank you to these volunteers.
Suzy has been a caregiver multiple times: first, for her infant with chronic, serious illness and now for her aging mother.
Suzy
Team LeadDan cares for his wife and mother and willingly shares his perspective on being a male care partner.
Dan
ContributorShelly is a long-time PF Warriors member who supports her husband in living with interstitial lung disease.
Shelly
ContributorRick supports and cares for his wife, who is a lung transplant recipient. They have an amazing story and much to share.
Rick
ContributorA Long Island resident and former nurse, Connie was supporter and care partner for her father and is now volunteering for PF Warriors.
Connie
ContributorPat is a tireless supporter of her husband, Bill, who has IPF. Also a mom and a grandmother, Pat is a mentor for many caregivers.
Pat
ContributorVictoria is currently supporting her husband, a member of PF Warriors, and another family member living with cancer.
Victoria
ConsultantKathy’s partner of 30 years was diagnosed with non-specific interstitial pneumonia 9 years ago. Kathy is her primary care partner.