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?
When Charlotte was first diagnosed in-utero at 20 weeks, that’s when I knew I wanted to hear other people’s stories. I contacted CFWA straightaway because at that point in time, it was likely she had CF and I knew that it was important to be connected. I also requested to speak to someone living with CF as ‘Dr Google’ was no help and was terrifying, so the genetics counsellor put me in contact with Adam. We spoke on the phone for over an hour, and after I got off the phone to him, I said to my husband, “Everything is going to be ok, we can do this”. It was the turning point of our journey, of the diagnosis. We were posed the question if we’d like to terminate the pregnancy and go through a panel. Having that and Charlotte kicking the bejeebies out of me at 20 weeks, it was a very difficult situation. So, I felt as though the moment I finished the call with Adam, it was like a weight had been lifted and it’s going to be ok, it’s going to be manageable. He had the very strong notion that nothing can stop him. His mother ingrained in him, “Pity isn’t an option and can’t doesn’t exist”. Right from a very young age she had instilled resilience in him; doesn’t matter about your CF – you get on with it, you do your treatment, you get on with life. That stuck with me like glue.
I ran up to him after he presented at the Conquer CF Ball because we’d never met, and I said to him, “Did you by any chance speak to someone 3-years ago? She was pregnant and had just the CF diagnosis”. And he said yes, and I requoted his quote and we said it at the same time. It was quite a powerful and emotional moment.
What are the benefits of connecting with other carers and hearing their stories?
It offers resilience, being connected with others alike; knowing that you’re not alone in the situation is a powerful thing. It gives you peace of mind, stops your mind from going crazy when you’re experiencing that first illness or that first resistance of medication. You speak with others who speak your language because no one else in the community outside of CF can really fully understand the double-barrelled-ostomy, and why are you talking about poos all the time. It increases your confidence and your positive feelings. When you’re feeling a bit down, it helps to bring you back up. When I’ve been in a really big lull and really upset, I have reached out to Kathryn from CFWA numerous times. And I thank you for that Kathryn; and as I’ve told others, I’ve always felt so much better after that phone call, just to let the tears out.
Do you have much contact with other carers and if so, how do you manage these contacts?
Very much connected. On the Facebook WA Parents and Carers of CF page, I’m quite active on there. Also, I meet with a group of mums for dinner once a year; it’s an open invitation and there’s usually about five or six mums that attend. I catch up with others at the Evening with CF Scientists, CFWA’s Ladies’ High Tea, Parent’s Retreat; we’ve gone yearly since Charlotte was born. I catch up with one particular mum on a regular basis with our non-CF children, and the Conquer CF Ball and the Casino Royale evening at the Left Bank. We’ve gone there every year, so connected that way. I’ve had two ladies sent my way as a point of connection and introduction; they were very anxious and new to the situation. And both ladies have said thank you for that offer of support, and that they’re really appreciative of having been given that hope and reassurance.
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?
My mum is the strongest anchor in our family. I’m fortunate that she’s a young mum and she was willing to take on that role. She learned Charlotte’s routine and her treatment and just follows it to a tee. I can send Charlotte to my mum’s house for a night, even for a weekend. She’s had her for a couple of nights and she’s done everything. My mother-in-law, she’s learned her percussions so she will do that for me. Close friends have dropped in when we’ve had admissions. It’s really a beautiful community that I’m in touch with. It was very hard for me to initially accept help. I’m not one to ask for help and I’m certainly a bit proud in that sense. And your pride takes a hit when you can’t manage any more. But once I did finally accept help and assistance, it was like a weight had been lifted and I haven’t looked back. Reaching out and asking CFWA for help, that was difficult, but even allowing my mum to learn the routine and take on that role was very difficult for me to let go. It’s a pride thing; you sort of feel, why am I not able to cope with it? But once you let go of that pride, you realise that it’s ok, and everyone needs help every now and then; you feel better afterward. If the shoe were on the other foot, I’d feel a sense of needing to help in some way, so to put yourself in your friends’ and families’ shoes, and know it’s ok, that they don’t resent you for it and you’re not a burden to them. It is really important; it is good for them as well.
Short films – what do you hope they will achieve?
I would like others who aren’t currently connected to reach out or to communicate to a loved one or a family member that they are struggling, and they need help. Or even go on the Facebook page and put it out there and say look, this is really tough. And the moment they are connected I think would lessen the burden, the guilt, anxiety and even feelings of depression. Because you can have some real big lulls, especially if your kid isn’t doing too well. Or if you’re projecting too far into the future of the unknown, that it’s really important to bring you back to the present. People who aren’t connected are the ones who are slipping through the gaps, and they can’t be the best that they can be for their child if their mental status isn’t where it needs to be. So, I would really really like for them to get the peer support that I so greatly benefit from.
The CFTalk: Parents and Carers films can be seen here.
Article from RED Magazine, Edition 3 2019.