One thing that is apparent to everyone involved in tube feeding is that finding tube feeding support resources is hard, especially when you are struggling and need it most. Starting tube feeding is usually secondary to a primary diagnosis – cancer, disease, mental aversions, or something else. The majority of care discussions focus on that condition leaving tube feeding as an afterthought.
How about that, eating, the fuel supporting the healing of your body, is an afterthought! Doctors and nurses, the main point of contact for most people, get very little nutrition education during their training. Dietitians, a great resource, are spread way too thin in most clinics. So, most caregivers turn to the internet for tube feeding support resources. Great, more work sifting through information to determine what to do.
One of the best things about Facebook are the groups dedicated to specific causes. Luckily, that includes tube feeding and there are a number you can to turn to. Typically, they are closed and you’ll have to apply for membership. Very often the group moderator either has a feeding tube or takes care of a tube fed person. These extra steps along with active moderation help make sure the content stays on topic and is relevant.
In these groups you’ll be a member of a supportive community. When you ask a question, the responses comes from someone in your situation. Here are a few to check out:
In addition to Facebook pages the organizations dedicated to tube feeding have websites with great information. You can check out their Facebook page to create dialogue, but the website provides a deeper level of tube feeding support resources.
In the United States an estimated 500,000 people are living with a feeding tube. No matter how overwhelmed and alone you may feel, rest assured that someone out there has had the same experience. Be aware that there is also a lot of misinformation out there so be sure to as pointed questions of your care team before making changes.
Explore the resources listed above and don’t be afraid to ask questions.