According to the 2017 Canadian Cystic Fibrosis Registry Annual Data Report, over 4,300 Canadians attended CF clinics that year. But we know that our community far expands that number. In addition to Canadians who live with CF, their caregivers, health teams, families, friends and much more are included in our strong community. We turned to caregivers in our community this week to ask them to share the lessons they have learned through caregiving.
“As a caregiver to a young child with cystic fibrosis, I have definitely gone through many emotions. Scared, sad, angry, surprised and now even thankful. When my daughter was first diagnosed (and even before that) I used to Google any and every information on the disease and it soon began to consume my mind, trying to desperately understand the disease so that I could somehow prove that my daughter didn’t have CF and that this was just a misdiagnosis. Soon after I would go to extreme lengths to try and protect her from everyday “germs” at the same time removing myself from CF community forums, moms groups and support groups in a bid to “make the disease go away” or live in denial. The first few years were hard, this disease does not just affect the patient, but the family as a whole and through the years and with the help of my daughter’s teams I’ve learned where to go if I had questions and needed support. After seeing a few lists circling the internet of “the places and things CFers shouldn’t do or go” and how ridiculous the thought of some of those things were, I’ve learned that CF patients cannot live in a bubble, it is incredibly unhealthy to try and do so and with trying to live a near normal life they actually thrive, mentally and physically. I guess the important takeaway here is, please take things you read on the internet with a grain of salt. For newly diagnosed families, do join support groups — they are very helpful, but do realize that not all information will pertain to you or your child and that there are so many good ways to get support in this community, your CF team is your number one ally, and they are always there to help!” – Melissa Gaudenzi
“The most important thing I have learned from being a caregiver is to trust myself. I am the one with my children 24/7. I have learned to listen to the CF care team,to really learn from them, and then apply their knowledge on a daily basis at home. I find myself wanting to phone the nurse, or the physiotherapist, or the nutritionist probably 10 times a day, with simple questions like “Does that cough sound too wet?”, or, “Should I do an extra physio today?”, or “Should I add some more butter to that?” I have learned to use my common sense along with the CF education I have received, to make a lot of my own decisions with confidence. I think back to when my kids were fist diagnosed, and I would call the clinic frequently because I was just so nervous. I have learned to be comfortable with symptoms, and knowing when something is worthy of an immediate phone call, or can wait to be addressed at our next clinic visit. I have learned how to be content with this disease in my life, and that has given me a confidence I never thought I would have.” – Sasha Haughian
Do you have insights you would also like to share? To be featured on our blog please contact Barbara at firstname.lastname@example.org