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Strategies for Staying Committed to Treatment | CAYSTON®
Cystic fibrosis (CF) is a difficult disease with a heavy treatment burden.
As a parent of an eight-year-old child with CF, I recognize that I have two jobs: to care for my son Bennett's health, and to teach and motivate him to care for his own health. Motivating a child to do anything can be difficult. But having to motivate them to do something they don't enjoy doing day in and day out can be emotionally draining. In addition to motivating a child to do the normal childhood responsibilities of homework and chores, I also have to make sure my son remembers to take all of his medications as prescribed. Treatments come in a variety of forms and are required to be given at different times. It can feel like all I do, as his mother, is stand in the kitchen preparing meds, cleaning equipment, or ordering supplies. It all feels never-ending.
The burden of CF care is so high that it can be easy to fail to give a medication or do a treatment when our family's schedule or priorities change. Even though I have charts to help remind me, there are times when evening activities or the need to eat or sleep becomes more important.
If I've given Bennett the responsibility to remember to take his medication and I find out that he hasn't, it's very tempting to become angry with him. Being a young child, he might simply be distracted or may not have remembered. Because I know the consequences of missing a dose, I can feel fearful and anxious, which I can end up placing on him. When this happens, I try to remind him that he's human, just as I try to remember this for myself.
As Bennett's mother and primary caregiver, I work toward partnering with him to create a treatment routine that works for his schedule. Even though he's just eight years old, I've learned to appreciate his needs, desires, and natural schedule. I try to connect treatments or medicines with pleasurable things. If a medication is not fun, I work to pair it with something that he enjoys so that he can associate something positive even when he's experiencing something negative. Certain therapies warrant special privileges. Certain medicines warrant special foods.
As Bennett's mother and primary caregiver, I work toward partnering with him to create a treatment routine that works for his schedule. Even though he's just eight years old, I've learned to appreciate his needs, desires, and natural schedule.
I have learned how critical it is to trust my child. He knows his body best—what he can and cannot handle. It's not in his best interest or mine to fight him. By trusting each other, we learn to partner in his care and get much farther. I also try to make the treatments Bennett has to do work in our family's schedule, so that it feels a part of our normal routine and not something different from the rest of us. I ask Bennett how he wants to take his medicines—is there a better time, place, or way to do it? Sometimes there isn't. But if there is, we make Bennett a part of the decision-making process.
We've found that homeschooling helps, because we stopped the additional pressures of homework and testing. However, we recognize that this isn't a forever decision. It's just the right one for right now. We tend to prefer to have more flexible schedules due to the volatility of CF, so organized sports is something we've delayed participating in. One day we may feel differently.
The goal for my family is to do the best thing for right now and recognize that things may change in the future. I encourage other parents to trust themselves first and trust their children as well. We have an inner self that tells us what we can and cannot do.
Balancing life and treating CF is challenging. The goal, for me, is to not give up when the treatment burden becomes too high. Persevering, prioritizing what has to be done at that moment, and recognizing tomorrow is a new day are the ways I resist giving up when it becomes hard. The goal is for our family to help support one another as we live this life.