Finding Balance as a Caregiver

Caring for children with cystic fibrosis (CF) can be a lot to juggle and it's possible feelings of burnout will arise. Between balancing work, childcare, and daily routines, caregivers often find themselves with increased responsibilities. Managing all of these tasks can be challenging, so it's essential to seek support and prioritize self-care whenever possible. The following tips may help caregivers navigate some of these scenarios more smoothly.

Finding your routine

Finding the right daily routine may take some trial and error, and that’s perfectly OK. You might need to make adjustments along the way to figure out what actually works for you. One fun way to create structure and build trust with your loved one is by turning certain responsibilities into a game and offering points, rewards, or positive reinforcement when your loved one completes them. There are some great phone apps available that can gamify tasks and help keep the whole family motivated, engaged, and productive throughout the week.

Breaking up the day into predictable blocks can give everyone a sense of routine. Perhaps your mornings are dedicated to chores and physical activities, while the afternoons are reserved for quiet time and crafts. Setting expectations around screen time can also help ensure everyone is on the same page.

“It’s been important for me to find balance in my life, and that includes making time for myself and for activities I enjoy as often as possible. These activities give me a breather amid the responsibility of taking care of a person with CF.”

—Maggie, CF Caregiver

Juggling work & childcare

Caregivers wear many hats. If you are working and need to be with your loved one while they’re not in school, try asking your employer for flexibility around where and when you work. Remote work could be a great option for caregivers who can take advantage of it long term—but remember, working from home doesn’t mean you don’t need outside support for caregiving! If extended time off from your job is needed to care for you or your loved one that has significant needs due to their CF, it’s important to know your rights under the Family and Medical Leave Act.

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Becoming a caregiver of someone with CF got me into this club where total strangers offer support and care. There is this assumption that our lives are parallel, our hardships and wins, and that we are all trying our best.”

–Carissa, CF Caregiver

Planning family vacations

Summer break and winter holidays are a great time to take the family on a getaway. While your loved one may see this as a vacation, it can actually be more stressful for the caregiver. Checklists are every caregiver’s best friend. Planning ahead and making a list of things to pack can help the whole trip go smoothly. You can find more tips to stay one step ahead in our Adventure is Calling article.

Prioritizing self-care

Admittedly, it is easier said than done to introduce self care into a routine. Managing daily stress and making time for yourself can feel like work on top of what might already be a full plate. But it’s important to understand how these things translate to your loved one. If you feel guilty doing something for yourself, remember that a healthier you can only lead to more positive experiences for those around you. Reflect on the following questions when you’re having trouble giving yourself the care and respect you deserve.