#TubieTalk Managing Medical Stress
Managing medical stress is essential for both individuals who are tube fed and their parents or caregivers. For people who are tube fed, the process can be daunting, especially when the tube is first inserted. Learning how to properly administer feeds and manage any complications that may arise can lead to feelings of anxiety and stress. It's important you seek support from healthcare professionals, connect with support groups, and practice self-care activities to manage stress effectively.
On the other hand, parents or caregivers who are responsible for the tube feeding of their loved ones experience their own unique set of challenges. These may include the constant monitoring of feeding schedules and ensuring that the tube is correctly placed, which can be both physically and emotionally challenging. The stress and anxiety of such responsibilities can have an impact on the caregiver's well-being. Therefore, it is vital for parents or caregivers to prioritize their self-care too. Practicing self-care activities and developing coping mechanisms can also aid them in managing their medical stress effectively, which is crucial for ensuring that they can continue providing the best possible care for their tubies.
Check out these Tubie Tips from the TubieTalk community on managing medical stressors!
“For me, sleep has been huge in my ability to manage stress and be the best parent/advocate for my son. This started from his NICU and has continued through multiple heart surgery/hospital stays. When he's been sedated in the ICU I've slept at home. Not only does this allow me to be present for my other child, but sleeping in my own bed has helped me to be my best self for when I eventually would be at the hospital 24/7 for overnights.” -Alyssa
“My best tip would be to stay as organized as possible! If my tube feeding and TPN supplies are organized I don’t have to think about setting up it’s just routine. If my medical notes are organized, it’s easier to find things I need urgently. I also have a small emergency hospital bag put together that has a change of clothes, list of my meds + tube feeding routine + TPN prescription, a button extension and a few drainage bags/syringes. It’s literally just a small backpack but really handy when there’s an emergency. Other than that, I try to get enough sleep and incorporate self-care into my days even if it’s just for 5 minutes.” -Annie
“I don't panic at things like l, his oxygen dropped to 88 and the machines alarming as I know after 5 mins it will rise again, I don't panic if he gets dry mouth as I know to adapt his glycol med to compensate the heat in hospitals, I educate to stop panic and stress and also learn what I can deal with at home instead of taking him in every 5 mins as hospital is a really stressful place with the lack of sleep or healthy food.” -Bugsy
“Finding ways to control things- advocating for change. We were part of @globalgenes compassion program last year (this year too!) and finding ways to share our experience and make something better or in control helped so much. So does therapy.” -Captain
“Find having the right medical and care team for therapy around you makes all the difference. Our son has a big team, and they are our great advocates for him.” -Oliver
“Medical stress is probably the hardest thing ever to handle as there's no getting around it. Twice in the past 3 weeks my son has ended up in hospital from bugs that don't affect healthy people and we are well trained, have all machinery and oxygen at home but he still needed cannulas. I find educating myself to be the best way to help the stress. I am sure in my decisions and forceful when I need to advocate.” -Bugsy
“This topic is so important! Finding a team that values the PARENT AS THE EXPERT ON THEIR CHILD and collaborates care WITH parents really helps.” -Tovah
“For me inpatient stays what helps me is bringing a stuffed animal and stuff from home to make it look like my room like my galaxy projector.” -Ava
“Have a diary, I write everything down. Our heart kid is very complex, so I write down fluid intake and output, activities, overall health and daily behavior. It helps me to feel like I have some control, even if I don’t, I transformed a rewards chart into my medication chart, so I always can see where I’m at with her meds. Tube change bag is always stocked for 5 changes, all tapes precut, always lives in the car. And small hospital backpack is always packed sitting next to the door. Preparation is key, gives me control in times where we’re clearly not.” -Tina
“Stay organized with supplies! And resource team to support!” -Jen
“You can say no to some appointments/ referrals.” -Hannah
“Watch or listen to a comedy! Drybar on YouTube is my favorite! Laughter is the best medicine.”-Katria
Overall, managing medical stress is crucial for both individuals who are tube fed and their parents or caregivers. By prioritizing self-care, seeking support, and developing coping mechanisms, you can manage your stress effectively and ensure you provide the best possible care for yourselves or your loved ones and remain thriving, TUBIE style!