My journey to becoming a caregiver for my mom, Holly, was a quick one. I learned about her prognosis and treatment options while she was en route to the ICU to await a lung transplant.
The exacerbation of her acute idiopathic pulmonary fibrosis was so sudden that there was no easing into the idea of becoming a caregiver. But there also was no question about doing it. As soon as I knew that a lung transplant was her only option, I was on my way to San Francisco, where her transplant hospital is located.
Everything worked out for us. For starters, I was not my mom’s only caregiver. My dad, Ed, also was on board, and my aunt Shari joined us after the transplant. Plus, I had many advantages that others may not have. Medical knowledge and experience, a young, fit body, a Type A personality, a wide-open schedule, and a supportive spouse all made it easier to take on caregiving at a moment’s notice.
The burden of becoming a caregiver overnight was nothing I couldn’t handle, but I wasn’t as mentally prepared as I would have liked. I was processing the new knowledge of my mom’s prognosis and coping with the harsh reality of her existence in the ICU while I was donning the caregiver mantle. There wasn’t a lot of space in my head to process big ideas and feelings while I was trying to keep my family afloat.
Luckily, the medical aspects of caregiving came easily to me. I have a good understanding of the body from a lifetime of athletics and several years of studying pre-medicine before I took a hard left toward a writing degree.
For someone without that experience, I can imagine gaps in understanding inside a medical environment. Knowledge is power, so if you’re a new caregiver, ask as many people as many questions as you can. Start with doctors, but if you still don’t understand something afterward or feel rushed, ask a nurse.
Finally, you can always find other patients and caregivers in support groups to talk to. Your social worker should be able to point you in the right direction, or even connect you to someone who has dealt with similar circumstances for one-on-one support.
Online groups have gained popularity in the last year. Even if you feel like you are, or will be, an expert caregiver, a support group is a great way to connect with others to receive and give moral support. I wish I had that before my mom’s transplant. But now I can share my experience to help someone else, and that always feels good.
Your loved one’s transplant team should encourage and educate you in your role as a caregiver. I read and watched all the resources provided by the transplant team while my mom was in the ICU. I learned everything I needed to know about post-transplant care — including medications, physical and occupational therapy, surveillance, and food safety — while I was doing whatever I could for my mom in the ICU.
If unlike me, you have time to adjust to the idea of caregiving, I recommend running drills in your head to see where your preparations fail. For example, if you will need to travel for hospitalization, are you truly ready? If you receive the call right now, are your bags packed? Do you have transportation figured out? Do your kids or pets have a caretaker on call? Does your boss know? Do you have a list of accommodations near the hospital that you’ve vetted? Are they handicap-accessible? Are they clean?
Had you thought of that stuff? Because I’ll tell you how fun it is to scroll through the Airbnb app at 11 p.m., exhausted and “hangry,” desperately trying to find any wheelchair-accessible rental in hilly San Francisco — preferably available tomorrow — after spending the entire day stressing out in the ICU. No fun — that’s how fun.
Caregiving is so much more than just “taking care of” your loved one. If you are able to plan ahead, I recommend that you don’t procrastinate or hide from the truth. Write the “out of office” email that you will set to bounce work communications. Set up a group chat of family and friends that you want to keep in the loop. Make sure you have the right insurance options. Get advance directives up to date. Keep the tank full. Pack the bags. Buy the shower bench and the nonslip floor mats. Give spare keys to friends to water your plants. Make a plan for pets and kids.
If you have time preceding your loved one’s need for care, be proactive with research and planning. Their transplant future may seem hypothetical, but if or when it becomes reality, you will be glad to be overprepared instead of overwhelmed. The more work you do beforehand, the better you will handle the inevitable curveballs.
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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