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Food and CF – Caregivers’ Perspective

For a caregiver, understanding the needs of the person you care for is very important. As we highlighted earlier this month, food and nutrition are a big part of daily care and treatment of CF [Link to previous blog: Adapting Your Diet To Summer]. So, how do caregivers support their loved ones with the particulars of a CF diet on a daily basis? Do they have any tips about how they help adapt it to warmer weather? Discover some of their useful tips and previous experiences below:

“Caregivers are abundantly aware of how precious additional calories can be. The symptoms of cystic fibrosis consume massive amounts of energy, which means it is very difficult to maintain a consistent weight. When my brother Myles had a feeding tube, my dad used to blend ripe avocados + weight gain powders into his nightly feed. My dad, Bernard, proudly shared his ‘feeding tube concoction/weight gain recipe’ with physicians at CHEO. His infamous recipe also includes turmeric, fish body oil, olive oil, ginger, powdered calcium supplements, seaweed, and whatever my dad felt that he could blend into Myles’ night feed. Physicians used to laugh about Bernard’s extreme efforts, but it helped Myles gain back the 20 pounds in 4 months (at a time when he really needed to gain weight)! Bernard would proudly advise to take advantage of just how easy adding extra calories can be through your feeding tube!” – Jillian Lynch, sister to a person with CF

“With summer (slowly) approaching, and the weather getting warmer and warmer, bike riding, swimming and outdoor activities are great ways for CF patients to boost their lung function and have fun at the same time. However it is important to be careful the kiddos aren’t sweating out too much salt and water. I always pack extra salty snacks and a refillable water bottle for my daughter when outdoors for long periods of time. My number one tip/trick is to have your kids eat a salty, high calorie snack both before and after exercise. You don’t want them losing too many of those much needed calories without replacing them. A great way to stay hydrated is to bring a refillable water bottle out with you, make sure they drink little sips frequently, even when they don’t feel thirsty. Dehydration is a very real thing for CF patients. Getting outdoors and enjoying summer activities is a great way to make memories with your family…and sneak in some extra physiotherapy, just be sure to keep your fluids and salts up and even ask your clinic dietician for any helpful tips they might have as well!” – Melissa Gaudenzi, mother to a child with CF

“Food is constantly on my mind as a CF caregiver. I have become a chef, prepping 3 meals a day, 7 days a week for 2 boys with CF. I aim for high fat, high salt, and low sugar. This can be tricky when my 8 & 6 year old’s favourite foods are jelly beans and gummy bears *insert eye roll*. I do take advantage of this however, when I make a healthy meal that they are not super thrilled to eat, I reward them (some may call it a bribe?) with a couple of candies. And every time they complain about the nutritious food I give them, I remind them how that food helps their bodies grow, and become strong. I find this is very helpful for 2 little boys who want to be fast runners and heavy hitters. My biggest goal in life is to teach them how to prepare healthy meals for their bodies as they get old enough to take care of themselves.” – Sasha Haughian, mother to two children with CF

 

Do you have insights you would also like to share? To be featured on our blog please contact Barbara at social@cysticfibrosis.ca