How a caregiver support group can benefit from a patient’s perspective

Last week, I participated in one of the most unique speaking opportunities I’ve had on my journey with pulmonary fibrosis. I was asked to provide a patient’s perspective to a caregiver support group.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, it caught my wife, Susan, and me completely off guard. We learned a lot — not only about IPF, but also about research, clinical trials, and lung transplantation. In July 2021, when I received a bilateral lung transplant, we started a new chapter of our journey.

Over the past seven-plus years, we’ve had opportunities to share our story with others. But this was the first time I’d been asked to share my pre- and post-transplant experiences with a caregiver support group.

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What I want caregivers to know

Caregivers may not have the same diagnoses as their patients, but that doesn’t necessarily make their journeys easier. When I was preparing for last week’s meeting, there were several things I wanted to ensure the group heard from me as a patient who has a great caregiver.

First, being a caregiver is hard. Be sure to give yourself the gift of grace. Much of what you do will be a new experience for both you and the person you’re caring for. Take time to learn from mistakes and celebrate the small victories. Most importantly, embrace the concept of grace as an “intentional act of spontaneous forgiveness,” as a Mental Health at Iowa article puts it.

Don’t believe that it is you against all odds. On my journey, Susan created a village of friends and family. Not all of them were physically present, but each had a role. Our village took on tasks ranging from checking on our home while we were away to helping us when we had to put our cat down shortly after my lung transplant.

The caregiver is an important part of the patient’s care team. Susan attended every single pre-transplant appointment with me. She served as an extra set of eyes and ears during my clinic visits. We hear things differently, and after each visit, we were able to compare notes. Susan also asked questions to help her better understand the information provided by my care team.

The last point I made to this group of caregivers was to always make time for you. Susan’s sister and a family friend agreed to come to the hospital before I was discharged after my transplant. The three of them attended the training session together, which was held at the foot of my hospital bed. This allowed the other two to relieve Susan in the following weeks so she could take time for herself — whether that meant getting a manicure, going to a movie, or simply taking some time away from her caregiver role. Caregivers must make time for self-care. (I do want to clarify that I did not require constant supervision post-transplant, but Susan was more comfortable leaving when someone was at home with me.)

After I got through all of my points, I opened up the dialogue to discuss the group’s concerns. The main topic the caregivers wanted to talk about was supplemental oxygen, specifically the types of oxygen available, traveling with oxygen, and the Supplemental Oxygen Access Reform Act of 2024. The Pulmonary Fibrosis Foundation’s “Oxygen Basics” booklet, also available in Spanish, is a useful resource for both patients and caregivers.

I think my discussion with the caregivers provided them an opportunity to ask questions they might not want to ask their own patients. I was pleased with the outcome, and I believe it gave everyone participating the chance to make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.