Cystic Fibrosis: The Challenging Role of Caregiver

Caregiving, although rewarding, is an incredibly challenging career. As a caregiver, it’s imperative to focus on both physical and mental wellbeing. The nature of caregiving requires long hours, physical demands, and mental exhaustion from the stress it involves. A high burnout rate exists within this industry, and for good reason. Coping mechanisms should be mandated within companies to prevent burnout, but unfortunately, they don’t always exist. Individual caregivers of friends or family members should research methods of coping with caregiving on their own.

Caregivers that work with rare and chronic illnesses such as cystic fibrosis are at an even higher risk of emotional and physical stressors. When you look at the nature of caregiving jobs in comparison to other health careers, the emotional strain is evident. Many caregivers are related to the patient they are caring for, especially in the case of cystic fibrosis. More often than not, when the caregiver is not related, they work very closely with the patient on a daily basis, creating a bond between patient and caregiver.

In terms of financial support, the caregiving profession is not known to be lucrative. Job stability and a regular paycheck are among the few monetary benefits, with no financial compensation existing for family members caring for patients. Some states offer compensation for anyone caring full time for a family member, but not all states are apart of this program, leaving some caregivers struggling financially with no other option.

Caring for someone with CF is “the most stressful and emotional journey”

Cystic fibrosis is a demanding condition for any skilled caregiver, and is even more crushing for a parent caring for their child. Children with cystic fibrosis have a shortened life expectancy and is an incredible emotional journey for any parents. In fact, the role of a parent caring for a child with cystic fibrosis has been described as “the most stressful and emotional journey any parent will experience.” Parents caring for children with cystic fibrosis experience a much higher rate of anxiety and depression that caregivers (or parents) of children with other illnesses. This stress takes a toll on the parent or caregiver’s well being and can exacerbate any illnesses they are suffering from as well.
Because caring for a loved one requires an incredible focus on the patient’s health instead of the caregivers health, many indicators of the caregivers mental and physical health are ignored. Often, anxiety and depression will gradually build up with no way to release the emotions. This incredible weight of emotional unrest can present itself physically and cause negative health effects on the caregiver. Higher stress puts the caregiver at risk of illness and/or fatigue which then puts them at risk for physical injuries. When stress and anxiety build up too much, it will begin to affect the quality of care the patient is receiving. This is why health in all aspects is such an important facet to the caregiving profession.

Read on to learn more about what cystic fibrosis caregivers face.