In anticipation of filming our CFTalk: Parents and Carers short films, we spoke with a range of carers from the community about their experiences caring for someone with CF.
When did you feel that you wanted to hear about other people’s stories of caring for someone with CF?
Initially I was focused solely on Anthony, trying to deal with the diagnosis and the feelings that came along with that. My circle was very small and that’s how I wanted it to be. My prior-CF knowledge was limited; I knew some people with CF required postural drainage and that the condition was life shortening but refused to ‘Google’ it. Instead, I followed the advice of the team at PCH. When Anthony was around 5-years old, I began to want to know more about how others managed challenges with CF. I began to engage with the CF community, e.g. how to cope with the new stages my child was going through and dealing with temper tantrums during physio. Advice from those who are living through similar circumstances was great and extremely useful and in hindsight I wish I had reached out earlier. On the flip side, I am now more confident to provide insight to others. At a recent workshop I attended, I initially thought I wouldn’t have much to offer but ended up contributing quite a lot to the meeting and surprised myself at how much we have grown on our CF journey!
What are the benefits of connecting with other carers and hearing their stories?
It’s great to connect with others knowing you are speaking to people who get it, who get how you feel and get the challenges you face. The one thing you do have to remember, though, is that everyone’s CF journey is different, so try not to focus on what happens to someone else as it might not happen to you. Now that my son is a teenager, it has really helped me to hear how others have navigated these tricky years. It makes me relax more knowing I’m not the only one going through it and has been a huge benefit. I really enjoy the CFWA events, the Parents Retreat in particular; it’s a great way to network, educate and build fellowships within the community. Talking to others is now really important for me. You do sometimes get exposed to stuff you don’t necessarily want to hear but again, you have to realise that everyone is on a personal journey and their journey is not yours.
Do you have much contact with other carers and if so, how do you manage these contacts?
I found it much easier to build contacts within the CF community once my son went to school. The internet and social media have helped to reduce isolation and I think it has been a benefit to the community. There are two or three people that I have regular contact with – other mums generally – but I enjoy the CF events and to see the familiar friendly faces. It makes me feel like I am not alone.
It takes a community to raise a child, many others also taking on a caring role throughout this journey. What has it been like sharing this role and how has that helped?
As a new mum, my world was very small; it was contained, and I didn’t want to share my baby with anybody. I had good support from grandparents and good friends within my church community. As Anthony got older and I returned to work, I needed to rely more on others and at one point, my mother-in-law moved in which was a huge help to me. Support is needed in many ways, not just with Anthony, but also emotional support for yourself. I am now finding time to enjoy things outside of the home and this is a really important thing to do for yourself. Finding a good local supportive GP is extremely helpful, too; one who is happy to share the CF journey with you as a family.
Short films – what do you hope they will achieve?
Fabulous idea for different stages; some families are not diagnosed until a later age (my son was two and a half). And they might also be good for those who are pancreatic sufficient as we are often forgotten, and the guidelines don’t always apply to us. Information such as newly diagnosed, CF with toddlers, starting school, adolescents, what to expect on an admission, and adulthood might also be helpful. Also, information about cross-infection as some people are more visual and might understand better than a written document. CF isn’t just one stage suits all, we’ve had different challenges at different times. Thankfully, being pre-warned means I feel armed for where we are at with the non-compliance stage.
The CFTalk: Parents and Carers films can be seen here.
Article from RED Magazine, Edition 3 2019.