Navigating tube feeding together: Let’s talk about navigating tube feeding and family life
Balancing family life while managing tube feeding comes with its unique challenges and triumphs. In this article, we hear from Georgia Gatherum, who shares her personal journey of navigating marriage, parenting, and daily life with a feeding tube.
From practical tips to personal reflections, Georgia offers an honest and inspiring look at how she and her family embrace life together.
Contributing expert: Georgia Gatherum (tube fed individual)
This article shares Georgia’s experience of tube feeding under her individual care plan given by a healthcare professional. Please do not change a care plan without speaking to a dietitian. All views expressed belong to Georgia and her family, and do not necessarily reflect those of Talking Tube Feeding.
1. Can you introduce yourself and share a bit about your tube feeding journey?
My name is Georgia, and I have relied on feeding tubes for nearly 15 years, starting my journey when I was 13 years old. I started with an NG tube (Nasogastric Tube) and then moved onto a NJ, however after various setbacks, I was moved onto TPN (Total Parenteral Nutrition) and remained on that for 7 years. I now feed through a surgical Jejunostomy tube, and I get all of my fluids and medication through it too. I am also a proud mum of two young children Lilli (aged 6) and Archi (aged 3).
2. How does tube feeding fit into your daily life as a parent and wife?
I turn most of my feeding tube setups and disconnections into fun activities where the kids get to help me, and we sometimes play games too. On school days, once I have got the kids dressed and ready, my husband (James) will take them to school and nursery, as I usually go back to sleep for a couple of hours once they have left because I get very tired.
Being chronically ill, we have to ensure we’re always very prepared for days out and holidays to make sure the days run smoothly. This takes lots of thoughtful planning, but it’s always worth it to ensure we have a fun filled day with very few complications.
Ensuring the kids have a consistent bedtime routine is also very important to us and it’s something I pride myself on as a mum. We do bedtime stories and try to make sure the kids are tucked up at the same time each night.
3. In what ways has your partner supported you through your tube feeding journey?
My husband supports me so much with my medical chores. He will always collect my meds and tell me if I'm running low, and he does the same with all of my other equipment.
In the evenings, James ensures I get everything I need so that I can do my meds while he gets ready for bed, which works well for us.
4. What are some practical ways you and your husband balance parenting responsibilities while managing your medical needs?
James does the school drops offs and pickups, he cooks everyone's dinner most nights and he always drives us where we need to go as sometimes, we have to travel a long distance to see family or friends.
I mostly take care of the kids with things like getting them ready for school or a day out, packing their lunchboxes and playing games with them. Sometimes I just need to pace myself to ensure I don't run out of energy too quickly as I want to enjoy every day.
5. Are there any routines, conversations, or practices that have strengthened your family life while navigating tube feeding?
I think the main one here is communication, which can still be a struggle, but we are making huge progress. Sometimes I may turn off my feed because I feel too sick but when I forget to tell James this, he wonders why I’m not giving my body what it needs, so confiding in each other and keeping a steady line of communication is key.
We have found that being on the same page or at least meeting in the middle about something if we don't initially agree with each other really helps our relationship.
6. What are some of the common misconceptions of tube feeding?
For me, it has to be that people just assume that because we have a feeding tube, we cannot eat anything orally! In fact, most individuals who have gastroparesis have probably been told that you should still try and eat something, as your stomach is a muscle and if you don’t use it, you’ll loose it. It is worth noting that what people can have orally differs from person to person and it’s important to speak to your healthcare professional before making any decisions.
7. What advice would you give to other parents who are tube-fed or caring for a tube-fed child?
I would say that just because you or your child are tube fed, it doesn’t make you or them any less of a person. You are just doing what you can to survive - remember you are strong!
If you’d like to share your tube feeding journey with us, we’d love to hear from you. Contact talkingtubefeeding@uk.nestle.com.
