CF and Caregiver Anxiety
I cannot think of a time that I was not anxious. I believe it is now a part of who I am. When I became a parent, it was increased.
My anxiety tripled when I became a caregiver to someone with cystic fibrosis.
The stress of a newborn is non-negotiable. It happens to every new parent and as far as I am aware, there is no way around it. There is zero sleep and a lot of stressors. Our son was barely a week old when he was diagnosed and the fact that we were actually new parents had barely had time to sink in. A diagnosis like cystic fibrosis was a shock to our systems. To me, it only amplified how I was already feeling with a new baby.
Feeling lost as a cystic fibrosis caregiver
After a diagnosis, there is new medical terminology, things to look for, numbers to watch, appointments to make, questions to ask, and answers that you don't have. There is no relaxing on the job. I weighed our son daily, almost religiously. Any backward movement would send me into a tail-spin. What did it mean? Was he losing weight? Why? What does that mean? What do I do?
I would like to tell you that as he has gotten older, this has changed. I wish that were the case.
When kids grow, you lose some of the ability to control most of what is happening in their lives, including food. I have to trust his CF care team even more now when there is not much weight gain. I am not with him all of the time now feeding him and measuring things out. I have to trust that he is getting what he needs to grow and that is hard for someone like me to do.
The constant worry about his health
There is so much anxiety with not just weight gain, but health in general when you are caring for someone with cystic fibrosis. When you are a parent and your child has poor PFTs over and over again, your mind races. You go to the worst-case scenario and it is hard to come back from that. When cultures show infections month after month, you go to a dark place. Admissions to the hospital can turn you into a shell of a person because of the worry, stress, and emotional toll they have the ability to take on the caregiver.
Every cough, every flu season, every extra bathroom break is when fear comes around. Every time I hear "Mom, I don't feel good", I start to panic a little. I make that switch from mom to CF CAREGIVER MOM really quick and my own fight or flight kicks in. The way I see it, we as his parents are trying to keep him in the best possible health that we can, by any means necessary. His health now has a big impact on his health as an adult and that is a lot for someone to carry, especially when it is your own child.
How I manage my CF anxiety
To combat some of this anxiety, I go to therapy and take anxiety medication. I write out how I am feeling. I share a lot with other CF caregivers, where I get a lot of support. We also have a wonderful relationship with his CF care team whom we put our faith in, which helps tremendously. In order for me to let go of some of what brings me down, I have to have the ability to trust those who watch over him medically. All of this has put me in a more positive place compared to where I was years ago.
I am not sure that I will ever completely let go of my caregiver anxiety. Honestly, I don't know if that is possible. I will always worry and probably always jump to the worst thing that could happen. CF is a disease of unknowns and multiple layers. There are so many differences between each person with CF. By addressing my own anxieties, I am able to care for our son to the best of my ability. The CF caregiver anxiety, I am afraid, is here to stay.
Do you experience anxiety as a cystic fibrosis caregiver? Share with us in the comments below.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?