4 lessons I learned from my wife’s becoming my caregiver

There are few guarantees in life. However, I can pretty much guarantee that if you are diagnosed with idiopathic pulmonary fibrosis (IPF), a caregiver is in your future.

Prior to my IPF diagnosis in January 2017, my wife, Susan, never attended medical appointments with me. I didn’t need anyone else present, as I hadn’t experienced a significant illness since I had scarlet fever as a teenager.

But when I was diagnosed with IPF, Susan was by my side in the exam room. That day, she became a caregiver. There was no application process. She could have declined, but she didn’t. She embraced the role, managing it like any major project she had led as a chief administrative officer.

I thought it might help to share some of the lessons I’ve learned from Susan.

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Lessons from my caregiver

First, the relationship between an IPF patient and their caregiver is a partnership. I found that using phrases such as “can you” or “will you” was far more effective than giving orders. Susan was neither an employee nor a servant. While caregivers are committed, their role is voluntary, often undefined, and as unique as the patient experience.

Caregiver self-care is important, as they need time to recharge and refresh. As patients, we may need to remind and encourage them to do so.

Second, caregivers experience IPF from a different perspective. While Susan did not physically endure shortness of breath, a bronchoscopy, or a bilateral lung transplant, as I did, she cared for me through it all. If our caregiver seems down, it may reflect the day we’re having. They may need us to care for them some days.

Third, I am embarrassed to admit this, but it took me more than a minute to get the words “thank you” out of my mouth, when it should have been a regular response. I realized this during a session with our therapist, who asked Susan how often I thanked her. I felt about 1 inch tall in that moment. It’s a lesson I’ve never forgotten, and even today, I am mindful to express my gratitude.

Finally, I learned to offer my caregiver grace in abundance. Susan had to do many of the chores and household tasks I had historically taken care of. While she learned them quickly, she was quick to criticize her work. I encouraged her to give herself grace, which was new for both of us. I tried to be better at offering encouragement while remembering she was carrying both of our responsibilities.

It’s important for caregivers to leverage any resources available. Caregiving is hard, and many have questions about the IPF journey. I discovered some time ago that caregivers often want to hear the patient’s perspective, though they may not ask their loved one certain questions for a number of reasons. If you are in a caregiver support group, ask the leader to arrange for a patient guest who is comfortable answering your questions.

But IPF patients aren’t the only ones with caregivers; they exist across rare disease communities. On Nov. 5, at 2 p.m. ET, join Juliet Taylor, a writer, ALS advocate, and columnist for ALS News Today, as she moderates a panel discussion about life and caregiving with ALS, featuring award-winning actor Russell Andrews. You must register in advance for this 60-minute discussion, which includes an audience Q&A.

Susan never signed up to be a caregiver, but she has embraced the role through every challenge we’ve faced since my diagnosis. We recently had to move from our lakefront home to a single-level house following complications from shingles and foot drop. It was difficult, but we did it together.

November is National Family Caregivers Month. If you are a caregiver, thank you. If you have a caregiver, I hope you remember to thank them. I know mine has helped me 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.