Recognizing Caregiver Burnout
As caregivers, we often get so caught up in the routines we have in place that we don’t realize just how much we are managing every day and how it can take a toll on us emotionally, mentally, and physically. When the role of being a cystic fibrosis caregiver is strenuous or stressful for an extended period of time, we are at risk of experiencing caregiver burnout.
Caregiver burnout can look different for everyone but a few common signs are physical exhaustion, insomnia, forgetfulness, and. irritability. Caregivers experiencing burnout may constantly feel unable to cope with your loved one’s needs, feel hopelessness surrounding cystic fibrosis, and regularly avoid important caregiving tasks. You may even be experiencing other physical signs of burnout such as panic attacks, stomach aches, or regular headaches.1
My experience with caregiver burnout
I recently experienced a bout of caregiver burnout. I noticed I was beginning to avoid things that had to do with my role as a caregiver for my toddler with CF. I was ignoring pharmacy calls and putting off sending in some simple paperwork to her doctors. Even though these were relatively simple tasks, just thinking about doing them made my stomach queasy.
I forgot to give my daughter enzymes with her meal three different times, which is very unlike me. And finally, later that week, news of a new and promising CF drug was released and instead of celebrating, my first thought was, “What if it doesn’t work for her?” And that thought was my final clue: I was right in the middle of experiencing a wave of caregiver burnout.
Once I realized what was happening I reached out to a couple of close friends who are also moms and caregivers of children with CF and told them how I was feeling. They came right to my aid with tips, affirmations, and advice for this period of burnout--but most importantly, they affirmed it was OK.
For me, how much I do for my toddler with CF becomes a reality whenever my husband and I have someone to babysit. As I explain all of her medications, the timings of doses, what symptoms to watch out for, etc. I see the person across from me widen their eyes in panic. I originally said, “She doesn’t need a lot. She’s just like taking care of any other kid,” but their reactions remind me that taking care of her is not just like taking care of any other kid.
Affirming our roles as caregivers
We need those moments to be reminded that our role as caregiver to a loved one with CF is extremely challenging. It can be mentally and emotionally overwhelming. For my own mental health as a caregiver, it has become important that I regularly affirm and acknowledge the difficulty of what we do each day for our daughter’s health. Although we are grateful for all we can do for our daughter, it is okay to feel overwhelmed from time to time.
Have you experience caregiver burnout while taking care of your loved one with cystic fibrosis? Share your experience with us.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?