Receiving a pulmonary fibrosis diagnosis is a life-changing event. Accepting this new reality may initially seem impossible. There are so many new things to consider that never were on the radar before they suddenly became important. In addition to finding your footing in the present, you must prepare for a future with a progressive illness.
Processing the reality of living with a chronic and progressive illness is a huge task. Unfortunately, working toward acceptance is a personal journey that can feel isolating. While everyone you love will have to do the work, too, your reality is different than theirs. Each person will go through this process in their own way.
I recommend adding a therapist to your team. Having an unbiased professional to help you understand your feelings and develop good coping skills is helpful. Sharing with a therapist allows you to be honest about the hardest parts of coping with your diagnosis while relieving you of the guilt that often comes with sharing bad news or difficult emotions with loved ones.
Therapists are trained to listen and help you through the rough stuff. And they leave your problems in the safety of their office when they go home.
As difficult as it is to accept all that a pulmonary fibrosis diagnosis means for your future, you and your loved ones must do it together. It is important to establish a support network and get those people up to speed on your prognosis right away.
My mom, Holly, had a hard time with the word “caregiver” at first. She recalled leaving a doctor’s appointment with instructions to attend a pre-transplant informational seminar and to bring her caregiver. At that point, her diagnosis was still up in the air, and she was just beginning to use supplemental oxygen. She wasn’t yet disabled by her disease.
She didn’t like the idea of having a caregiver. Her spouse helped her when she needed it. Applying the word “caregiver” to him changed their relationship from a partnership to something different. And that was uncomfortable for her. She didn’t want to feel like she needed a babysitter. She didn’t want to need help. She didn’t want to be disabled.
After a lifetime of being active and independent, learning to recognize that you need extra help can be demoralizing. Things like having co-workers help you with strenuous tasks, applying for a handicap parking pass, or realizing that taking the stairs instead of the elevator is not a choice anymore can feel like a punch in the gut.
I know my mom had a lot of these moments as her disease progressed. She didn’t let me see that pain often, but I know it was there. My dad had to face these changes alongside her, and he shared his concerns with me. As her family, we did our best to support her through those changes, but we let her lead the way.
I didn’t become a caregiver until Mom was in the ICU fighting for her life. Initially, I cared for her in the most literal sense of the word. I cared about my mom’s life. I cared for her body by giving her foot rubs and painting her nails. I cared for her spirit by being present and spending time with her. I cared for her mind by engaging her with games, art, and storytelling.
My caregiving started in those ways but grew to be more. I became her voice when she had a tracheotomy and her advocate when things weren’t going well. When she was accepted and placed on the transplant waitlist, I gave consent.
When my mom was discharged from the hospital with two new lungs, I cared for her in all the ways that typically come to mind when you hear the word “caregiver.”
As my mom’s illness progressed, the word “caregiver” stopped sounding like a dirty word. It started being something that my dad, Ed, my aunt Shari, and I embraced and embodied. We are proud of the title, and my mom is grateful to have had three of us.
When I talked to my mom about this topic, she wanted me to emphasize that caregivers are absolutely necessary for transplant. You have to get over any stubbornness or shame that you have about relying on a caregiver. Needing help after a lung transplant does not make you weak!
While it might be hard to accept at first, having a caregiver, whether it’s a family member or a home health nurse, is crucial to survival. Even if you’re in great shape going into surgery, you can’t do recovery without at least one caregiver. And it’s not just practical, it’s required. You won’t be listed unless you have a caregiver lined up!
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.
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