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The unique challenges of caregiving

In honour of Family Day, we are excited to share this caregivers community blog post. We have reached out to parents and siblings of people living with CF and asked them to share about their experience of being a caregiver for a person living with CF. Learn more about what it means to care for someone with CF and what some of the unique challenges are:

“It wasn’t until I had reached the age of eight years old that I realized my family life was different from my friends. My third-grade teacher asked the class what we had discovered over the weekend. With each response, it became clearer to me that my family’s weekend in the hospital was a stark contrast to the experiences of my closest friends. Up until that point, my brother, Myles, and I thought that going to the hospital was an incredibly normal part of life. We weren’t particularly aware of any other sort of life experience; we grew up in a small town without much access to television or other screens, and the longest my family had experience life outside the hospital was 4 months. Like most kids, we found immense pleasure in finding ways to keep things fun. Throughout hospital admissions, we kept ourselves busy with laughter, singing competitions, and the odd art project. As we grew older, and our challenges with cystic fibrosis demanded greater resilience, we realized the inescapable reality of this life-long disease. Cystic fibrosis uprooted our family from our hometown and brought us to the heart of Toronto where my brother had his first (2014) and second (2017), double lung transplants. This is when our understanding of life with CF shifted again. Watching Myles survive two lifesaving double lung transplants before even having a taste of his 20s, inspired me to find ways to make his lifetime worthwhile. I suppose, the greatest gift that CF gives us is an unfailing reminder of the fragility of life and fascinating relationships that form from offering our truest care.” – Jillian Lynch, sister and caregiver of a two-time double lung transplant recipient who lives with cystic fibrosis.

“I’m a single mother to two boys, Jérémi, 14, and Gabriel, 12. Jérémi has cystic fibrosis, which means that I must be available every minute of the day and night because I never know when he won’t feel well. My role as a mother and caregiver is multifaceted. I’m there to support my son through all the ordeals he must endure, to provide the care he needs to keep him healthy (IV treatments), to ensure that he has all his medications, to accompany him to his appointments at the CF clinic, to bring him to the emergency room in the middle of the night and to encourage him to move forward even when the disease bars his path. It pains me not to be more present for my other son when Jérémi is hospitalized; appointments and hospital stays are always outside of our rural area. However, what’s important to me (and my greatest challenge) is to stay strong, to remain hopeful and to hide my concern for my child when I know that this horrible disease is silently destroying his body.” – Marie‑Claire Cadieux, mother of a young boy with CF

“Cystic fibrosis is a complex disease. A caregiver plays not only an essential role, but different roles at different stages of life. Who are caregivers you ask? The short answer is most of us, at some point in our lives. Caregivers are daughters, wives, husbands, sons, grandchildren, nieces, nephews, partners and friends. Being a care giver means administering daily medications and breathing treatments. It means being a cheerleader and a nurse. Being a caregiver means being strong even when you feel weak. Holding hands and hugs during blood work and other procedures, answering questions with a positive attitude even if you don’t truly know the answer, smiling and encouraging even when you are crying on the inside, providing hope when the tough questions come about death. The challenges of being a caregiver to someone with cystic fibrosis are finding a daily routine as just when you think you find one the schedule changes and new medications are added. Fearing the unknown of what germs and bacteria are out there that could cause a massive set back, getting up extra early to fit in breathing treatments before the day starts when you are tired, worrying if they are eating enough, wondering if their lung function will remain good. The list goes on and on. With that being said being a caregiver to my child is the biggest blessing as I am her biggest cheerleader and often when I think I am caring for her she is teaching me life lessons about what it means to be strong and fight the unknown. Being my child’s caregiver means a deep bond that most will never understand and a desire to give her the best care possible!” – Rachel Newell, mother of a young girl with CF

“I like to think of cystic fibrosis as a sport. My 2 boys with CF are the players, and as their Mom/Caregiver, I like to think of myself as their coach. Physiotherapy, medicine regimes, and rigorous eating habits are the daily drills my players are never allowed to skip out on. Like any good coach, I am trying to make this game fun. I do my best to teach, motivate and inspire my players to practice proper therapy techniques, be aware of the food & medicine their bodies need, and to properly manage their time. This can be difficult when they are constantly versing some scary opponents. Every day they battle harmful bacteria & superbugs, they fight malnutrition, and they are always racing against time. Every parent likes to feel in control, and the hardest part for me is knowing that I am not always in control of this game. But I do believe that if they show up to practice and work hard, they’ve got a good chance at kicking some cystic fibrosis butt!” – Sasha Haughian, mother of two children with CF

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