Caregiver: Gatekeeper, Advocate, Ears, and Village Builder

I thought I understood the role of a caregiver. It was based on what I learned and observed watching others. It turns out I did not fully appreciate the role until I had a caregiver.

The role of the caregiver is not a single responsibility, but a collection of responsibilities that generally benefit the patient or person being cared for. In my case, the role of caregiver was fulfilled by my wife, Susan. Both Susan and I, prior to my idiopathic pulmonary fibrosis diagnosis, were fiercely independent, successful people in both our professional and personal ventures.

Following my diagnosis in January 2017, Susan, without hesitation, stepped in to assume the many roles of the caregiver. In her case, those roles were gatekeeper, advocate, ears, and village builder. What had always been “I” or “me” quickly became “we.” Together, we made a formidable duo, ready to take on everything we would encounter on this journey.

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Caregiver as gatekeeper, advocate

We became self-sufficient in many ways; however, we still had to rely on things outside of our home. In those cases, Susan became the gatekeeper. She firmly established and enforced the rules for our home. She secured masks, sanitizer, gloves, and cleaning wipes. She applied the rules to everyone equally, including me. When a contractor had to come into our home to provide service, the rules applied. Friends and family were able to visit on our front porch, which was outfitted with fans or propane heaters, depending on the season.

In her role as advocate, Susan provided details she felt were important to my (our) care team, or she would ask questions to better understand a concern or medication. Initially, the day before an appointment, she would ask me if I wanted to know what she was going to say. That quickly changed as I soon came to accept Susan’s role as an advocate for our journey.

Caregiver as ears, village builder

It is often recommended that patients bring a second set of ears to appointments. Susan has attended every clinical appointment with me since the day my diagnosis was confirmed. She has been that second set of ears. She made notes during every single appointment. Often, while driving home after an appointment, she would ask what I thought, or what I’d heard. We compared notes, clarified with our care team when necessary, and then made our plan.

Samuel, who is badly in need of a haircut and a shave, and Susan stand in front of a wall of greeting cards that decorate their temporary post-transplant apartment. (Photo by Samuel Kirton)

Perhaps you are familiar with the phrase, “It takes a village.” While there is some disagreement on the origin of that expression, it has become popular with respect to raising children. We can tell you it takes a village on our journey, too.

Susan was our village builder. She recruited our village, coordinated every task or detail, and dealt with unplanned or pop-up situations along the way. She knew what resources each member of the village brought or offered. On July 9 of this year, the day we got the call that my lung transplant was set for the following day, she knew exactly who to call to help us load the items we needed into the car. She rallied the village, which had expanded nationwide, to send cards to decorate our temporary post-transplant apartment near the hospital. A caregiver is truly not a single role.

In my first two columns, I frequently used either “I” or “me,” but almost every instance could have been replaced with “we.” We are a formidable team, and that will not change. As we walk into 2022, with 2021 now behind us, we will continue to make every breath count.

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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.