Although I knew persons with dementia will often not eat in the late stages, I did not want artificial feeding via a feeding tube, or Percutaneous endoscopic gastrostomy (PEG) tube to be official. I know some families put in a g tube because their loved ones stop eating and I knew we wouldn't be doing that at the end stages; I never thought about my mom needing a PEG tube because of difficulty swallowing (dysphagia) and liquids going into her lungs instead of her stomach (aspiration) even though she very much still wanted to eat. What is the option? Let her starve or allow pneumonia to set in? Since she is very much still conscious and indeed wanting to eat all the time, I reluctantly had the PEG tube put in to supposedly prevent aspiration , and hopefully increase her weight and hydration. I wasn’t going to deny her the pleasure food she enjoys, but at least the choking would be minimized by giving her small amounts.
Although it was definitely the right choice to put in the tube at this point, there was a lot of vital practical information I wasn't given which would have been beneficial, and were the situation different, could have influenced my decision.
Here's some info I wish I had:
Tube Feedings will not Stop Aspiration:
Although she isn’t drinking she’s still swallowing saliva constantly and that is still going into her lungs.
Often times the liquid introduced into the stomach back flows up the espophagus and again can end up in the lungs. This is definitely the case with my mom as she now has constant phlegm caused by the formula.
The formula (bolus) distends the stomach making it easier for the liquid to travel up the esophagus and into the lungs.
Diarrhea!!
Included in my tutorial on how to administer tube feedings, the hospital staff should have definitely told me the high rate of diarrhea and how to deal with it, but I wasn’t told a thing. Now my mom has a terrible fungul infection cuasing her to scream in pain whenever I clean her. Every time she coughs or turns, she leaks making her dirty. In fact, the more I clean her the more irritated and inflamed her skin gets to the point of skin breaks. She’s taking both oral and topical steroids and anti fungul cream to no avail.
A pallatiave nurse explained these formulas can be too high in sugar or protein which can cause irritation and infection. There are different formulations (again, who knew?) that a dietician can recommend so make sure you consult your Dr. right away if your loved one is having diarrhea. A nutritionist recommended adding banana flakes (only available on line) so I’m still waiting and hope that will help. I’m also now waiting 3 days to get the new formula from the specialty pharmacy since my Dr. told me it was available over the counter or readily available at your neighborhood pharmacy. It isn’t. So more days of diarrhea and discomfort for my mom!!! Have your physician contact the specialty pharmacy that delivers formula to make any changes right away—most of these are NOT available over the counter or at regular pharmacies. Medicare should be covering these formulas as well to some degree so don't order on line like I did initially, get the prescription.
I learned this information in bits and pieces speaking to various hospice nurses, gastroenterologists, otolaryngologists (ENT). I hope it gives others some starting points for conversations with your doctors, and would love any insights anyone has to share.
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