Finding a balance between working and caregiving as a CF parent
Like many families, we struggle with the high cost of living with cystic fibrosis
I hate to admit this, but retail therapy is a coping mechanism I use when I’m stressed. It can be as simple as treating myself to a new facial product, but the expenses can add up quickly. Before I had my daughter, Claire, I didn’t worry about it much. I had a great full-time job that allowed me to indulge. However, the reality is that I don’t have a lot of discretionary income these days.
When Claire was in the neonatal intensive care unit due to her cystic fibrosis (CF), my husband and I made the difficult decision that I would not go back to work full time. We knew her care would require one of us to be more available for doctor appointments and treatments. So instead of returning to my job as an attorney, I returned to work part time when Claire was an infant.
Big life changes
It was an incredibly difficult time. We were coping with a new baby and a CF diagnosis while taking a significant financial hit. Studies have shown that many caregivers face similar decisions and experience occupational limitations due to their caregiving responsibilities.
I personally know many cystic fibrosis families who opt to have one parent stay home and quit work completely due to their child’s illness. It makes sense because children with CF need a certain level of detailed care that only a competent, educated caregiver can provide.
For our family, however, one parent staying home wasn’t an option, though part-time work seemed like a viable solution. We would be able to switch off caring for Claire and require minimal child care resources while still bringing in a double income. But even with my part-time status, I struggled to find enough time to work and manage Claire’s care.
Bills, bills, bills
Life got a lot more costly when we had Claire. CF is an expensive disease. There are the obvious expenses, such as monthly medications, medical equipment, copays, and deductibles. But living with cystic fibrosis involves many additional costs that may not be as apparent, such as specific dietary needs and work absenteeism due to medical appointments or hospitalizations. Many CF families struggle with the heavy weight of the disease’s financial burden.
Today, I work full time because of the expenses associated with Claire’s condition and the increasing cost of living we’ve been experiencing in the U.S. I’m constantly having to balance being able to afford Claire’s care with caregiving and being a physically and emotionally present parent. I still have to take time off work to attend appointments, make insurance phone calls, and handle the day-to-day management of Claire’s care. That means I need to make up the time late at night or on the weekends.
I frequently question how I’m going to get it all done. I have to be close to flawless with my time management and budgeting every single day. It’s exhausting, but I know this is what I have to do to provide the best care for her.
Caregiving for a child with cystic fibrosis is a full-time job by itself. Add a job outside of the home and it can be overwhelming. I don’t know if I’ll ever figure out how to balance it all effectively. Some days I feel like I’m drowning. For now, I take things one day at a time, knowing I’m doing the best I can.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.