Challenges of Being A Caregiver with CF
Cancer is an unwelcome yet frequent visitor that seems to always show up uninvited in my family. As a kid, I lost my dad to pancreatic cancer and watched my mom go through breast cancer and melanoma. Each separate instance of cancer was difficult to experience as a young child, but as a family we survived and carried on with our lives.
Naively, I assumed that would be the end of my family’s cancer journey. However, the only thing worse than watching a parent go through cancer as a kid is watching them go through it as an adult– which is where I find myself right now.
Caregiving with CF
A few months ago after a stroke, craniotomy, and many scary moments in the ICU, we received the news that my wonderful mom had Stage 4 Melanoma that had metastasized to various places including her brain. Her diagnosis was incredibly difficult to digest, rightfully so. In order to help her, my sister, family, and I became her caregivers while also trying to balance our own work, families, with my own added personal bonus of cystic fibrosis.
I had never been in this situation before–caring for someone else with complex medical needs apart from myself. What type of challenges would I face caring for my mom while managing my own cystic fibrosis? Would the demand for caregiving have an effect on my own health–both physically and mentally? How could I give my best to both parties?
Caregiving and your own health
About 1 in 3 adults in the US serve a caregiver to a loved one. Caregiving can be a very demanding role. The physical demand of meeting someone else's needs accompanied with emotional grief is an extremely stressful time on the body and mind. Research shows that anxiety and depression, as well as increase in physical sickness, are common effects when serving as a caregiver to a loved one.1-2
How am I surviving?
Of course while supporting my mom through her sickness, I need to pay close attention to my own health. Thankfully, my lung function, mucus production, and cough have all stayed relatively the same throughout the last few months. Admittedly even though I have missed a few treatments due to tiredness and being busy caregiving, I have managed to stay healthy with one random bout of IV antibiotics early on. I am very thankful to have Trikafta as a tool during this time. Without, I can only imagine how much I would be struggling physically.
How am I struggling?
The downsides of caregiving has been an increase in chronic pain exacerbated from RA, likely due to stress. My joints have had a hard time the past few months even with trying different treatment options like injections. In addition, keeping weight on during stressful times like this has routinely been an issue for me.
The same is true now. In order to hold onto the weight I have I am trying my best at using all the CF weight-gain tricks I learned growing up. Hopefully with consistency I can increase my calories and hold off on losing any more weight.
Although this time has been extremely challenging, I know that caring for my mom is exactly what I want to be doing. I just have to remember to keep myself healthy and strong while supporting my mom when she is not healthy and strong. You cannot pour from an empty cup, nor expect to help with a neglected and pain-ridden body. In the end, I am doing my best. Hopefully, I will continue to try to take the very best care of the both of us.
Have you had a flare on Trikafta?
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