IPF Caregiver and Mentor’s Advice: Treasure the Time That We Have

When Susan Arick Spears learned of her father’s illness, she felt blindsided. “I hung up the phone and just stared out the window. For hours.” The call came in October 2016, she said in a recent interview with Pulmonary Fibrosis News, while she was traveling with her work. First, the doctor talked with her dad, Joe Arick, and then, at her father’s request, called Susan. Her dad has idiopathic pulmonary fibrosis, or IPF, Spears was told. The disease causes the deep tissue of the lungs to become thick and stiff, and over time, that tissue becomes scarred. The scaring prevents the lungs from carrying oxygen into the bloodstream, and the lack of oxygen damages vital organs. “After I hung up the phone, I stopped working, right in the middle of the day. I went back to my hotel room, which had a view of the ocean, and I just stared out the window,” Spears, 43, said from her home in Birmingham, Alabama. “I don’t think I left that room for the rest of the day.” She and the doctor talked on the phone for a long time, she said. Because of her work as a pharmaceutical sales representative, she knew enough about IPF to understand how serious the diagnosis is. And it scared her. “I would have been less surprised, less terrified, by a tumor,” Spears said. “At least the medical community has more knowledge around tumors, more options. I hated that this was happening to my dad.” She well understands how difficult treating this disease can be, and the side effects those treatments can bring. To protect her family from the harsher realities of IPF, she said she sometimes kept conversations vague: “I was holding out hope.” But it didn’t take her long to start taking action. She realized her medical knowledge — the knowledge that had instilled so much fear and dread when she first learned about her father’s diagnosis — was the very thing that could be so useful in helping him manage it. “Working with medical professionals for so long has been really helpful for me in my role as a caretaker. I understand the terminology and methods physicians use, but also, I know first hand how busy they are,” Spears said. “So I know that from time to time, I have to be assertive to make sure I’m getting the best care possible for my dad.” In March, she became a “mentor” for the disease through a program offered by Boehringer Ingelheim Pharmaceuticals that is designed to offer inspiration and hope to patients and their families and friends. Mentors undergo formal training so they can advocate for the PF community, especially in September — PF Awareness month. In addition to raising general awareness, mentors share information and speak about their own experiences as patients or caregivers. Spears advises anyone in a caretaker position to push — politely — for what the patient needs, even if it takes several requests. “Don’t take it personally,” she said of rejection. “Doctors and nurses have a lot to do. It’s important not to give up.” And she encourages caretakers to question anything they don’t understand. “If a doctor is requesting a test, ask what they’re looking for, what they hope to learn and why,” she said. Spears points out that caretakers are in a unique position to know patients’ limitations, and needs they might have that aren’t being expressed. In helping her dad, she focuses on those areas to make sure that nothing falls through the cracks. Like many caretakers, Spears juggles a full life — a husband, young children, a busy career, and very ill parents. “I try to slow down,” she said. “And I remember that some aspects of my dad’s condition have given both of us moments of profound beauty. “Because of IPF, I’ve spent time with my dad and heard stories I otherwise would have missed. I guess the lesson I’ve learned is that we all need to pay attention to each other.” "Life is precious,” Spears said, “and IPF reminds me to treasure the time that we have.”

Posts by: Nancy Brier

Nancy Brier

IPF Caregiver and Mentor’s Advice: Treasure the Time That We Have