Coping While Caring for Someone With Cystic Fibrosis

Caring for anyone with a long-term disease -- especially if that person is your child -- is stressful. Parents of children with cystic fibrosis are more likely to experience anxiety, depression, or both compared to parents in general.

5 min read
Summary
  • Parents of a child with cystic fibrosis can focus so much on caring for their child that they do not notice when they are beginning to have problems themselves.
  • If you recognize signs of stress, talk to your child's care team and your primary care provider so they can work with you on ways to reduce it. This way, you can avoid developing more serious depression and anxiety. 

Parents of a child with cystic fibrosis can focus so much on caring for their child that they do not notice when they are beginning to have problems themselves. The build-up of stress and anxiety can be gradual and, if you're not paying attention, can cause larger problems before you realize it. Symptoms of depression, anxiety, or both can interfere with your ability to take care of your child effectively. Taking steps to take care of yourself can help you, your child, and the rest of your family.

If you recognize signs of stress, talk to your child's care team and your primary care provider so they can work with you on ways to reduce it. This way, you can avoid developing more serious depression and anxiety. 

Signs include:

  • Physical problems, including headaches, stomach problems, back pain, and sleeplessness
  • Emotional issues, such as frustration, sadness, depression, anxiety, guilt, anger, loneliness, resentment, decreased enjoyment of pleasurable activities, social isolation, and blaming
  • Mental issues, including forgetfulness, mental exhaustion, more frequent accidents, trouble deciding, poor attention and memory, and confusion
  • Spiritual issues, including feelings of alienation and hopelessness
  • Recognizing these feelings is a sign that you may need help with your caregiving responsibilities. These responsibilities can include asking family and friends for help during chest physical therapy (CPT), picking up prescriptions or driving your child to a CF care center visit

The following tips can help you avoid becoming overwhelmed:

  • Respond to bills, medication instructions, and insurance forms as they arrive.
  • Learn as much as you can about CF if you haven't already. Connect with other parents of children with CF for general support and advice on how they handle their responsibilities.
  • Make time for yourself and others who are important to you, such as your spouse or partner, friends, and family.
  • Eat a healthy diet.
  • Practice good sleep habits. Do your best to get enough sleep. Go to bed and wake up on a consistent schedule. Avoid staying in bed when you are not sleeping.
  • Get outside or in nature for 30 minutes each day.
Matt James asks Dr. Anna Georgiopoulos what parents and caregivers of children with CF should do when they're struggling with depression and anxiety.

Advice From Other Parents

One way to reduce the stress associated with taking care of a child with CF is to stay as organized as possible. Other parents with children with CF face many of the same stressors that you do, and we have asked them for their tips for reducing stress by managing their time.

Kat Quinn discusses the emotional toll CF takes on parents and caregivers of children with CF and the importance of help and support.

Make your child's respiratory treatments part of a daily routine from the beginning.

  • “Working CF treatments and medicines into a daily routine allowed them to become natural. Then, everyone feels like it's normal. It is natural, everyday life for families with CF.” - S.M.
  • “Allow your child with CF to always be a part of all family activities; don't exclude them because of their therapies.” - R.C. 

Establish routines early, and be consistent. Maintain a daily schedule of treatments and share the schedule with your child.

  • “Include CF in your routine as a step, but not the primary focus. Brush your child's hair, brush their teeth, do their treatments, nebulizer, airway clearance. Let them make some choices. Ask where they want to do their airway clearance, on the floor by the TV, or over by the toys.” - K.B.
  • “Treat your child like a typical child -- not as a CF patient. Expect of them everything you would if they did not have CF. Incorporate CF therapies into your child's daily regimen and do not let your child's treatment regimen dictate the daily schedule.” - J.K.
  • “Although CF is a huge part of your child's life, it's helpful to remember that he or she is still a child and to focus on the normal part of childhood, like you would with any child.” - M.T.
  • “I think as a family we try not to limit the lives of our daughters with CF. They are able to participate and do just about anything that they want as long as we still fit in the daily items necessary.” - A.H.

Have a typical day's schedule for your child, with approximate times for nutrition and airway clearance.

  • If you have a copy of directions handy for snacks and meals with appropriate medication doses and directions, a sitter can easily step in!
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Downloads
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