Celebrating Our Caregivers

During the course of having idiopathic pulmonary fibrosis (IPF) or any other rare disease, the role of the caregiver requires a large measure of patience, an ability to multitask, and the capability to pivot without knowing what lies ahead.

Caregivers, whether working alone or as part of a team, deserve significantly more recognition than they receive as a critical part of our care teams. That includes my own caregiver: my wife, Susan.

My caregiver

Susan has stood with me throughout my IPF journey, from the day I was diagnosed, through four and a half years of pre-transplant life, and now over seven months following a bilateral lung transplant.

Receiving a lifesaving bilateral lung transplant does not mean our journey is over. It has just changed. We continue to work to make every breath count.

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This angel has roamed the globe with me, kept me strong during the really bad days, sat alone in waiting rooms watching the door for my doctor, and taken care of all of the things I wasn’t able to do in recent years.

This picture of Susan became even more special after my diagnosis. (Photo by Sam Kirton)

I wish I had known

There are several things I wish I had known about the caregiver role when I began my IPF journey. I hope I have learned them along the way and can share them with you here to honor them.

Let me start with what I view as the most important lesson, which is simply asking, “How are you doing?” Caregivers are often exhausted, more than most people can imagine.

Susan took care of many daily tasks I was no longer able to do. As my IPF progressed, the list of those tasks became longer. Susan took on most of them while continuing to do all the things she normally did in our household. When you add in the stress of additional precautions due to a pandemic, the caregiver’s combination of stress and anxiety can be overwhelming.

Empathy realized

I had always considered myself a person who understood and lived the meaning of empathy. How did I miss putting myself in her shoes? I was so focused on how IPF had changed me that I missed asking her how she was doing.

The caregiver experiences the same disease we are faced with, but from a powerless role. Susan could not make me better, she could not make the medications work better, and she could not see into the future with any clarity. It was not that she had too much to do, although she did; it was that she felt powerless while watching her husband decline.

A very emotional conversation, which should have come much sooner than it did, allowed me to see her role as I had not ever imagined. Susan, to this day, attends every clinical appointment and every procedure appointment; she takes notes, asks questions, and is my fiercest advocate. In that conversation, we talked about her fears, the challenges of juggling everything in both of our lives, and the reality of the future that was closing in on us.

“How are you doing?” is an important question.

Thank you

National Caregivers Day is Feb. 18 this year. To caregivers across the rare disease community let me say — thank you. I celebrate you. I hope you know the importance of your role as not only a caregiver, but also a partner, advocate, and ally.

Make sure you care for yourself during this journey. You are a key part of a formidable force in the face of any rare disease challenge to make every breath count.

Let me ask the caregivers who follow my column: How are you doing? You can respond in the comments below.

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.