Welcome to OCF, RobinAnn!!! Im very sorry it took me so long to reply!!! Im certain if you spend some time reading posts and on the main OCF site, you will find tons of helpful info and gain the support of our members who are here to help you and your X as much as possible.

First Id like to touch on something Ive frequently seen in hundreds of patients (not to stereotype but its usually men who are the most stubborn), causing their own suffering by being overly stubborn to the point of being irrational. Its impossible to accomplish anything or make progress when the patient fights you about everything every step of the way. Im sure you have done everything possible to help your patient and put tremendous effort into following his doctors orders. Living so far away, add the Corona pandemic government mandated self-quarantines, plus having a miserable, irrational, stubborn patient .... and you're destined to fail no matter what you say or do. Being the closest person to the stubborn patient and you are the perfect target to take the blame for everything wrong in the world. This type of patient will never accept any other explanation for their suffering... its everyone elses fault for everything (especially the caregiver!). The stubborn patient is always in denial, never personally doing anything to cause their current situation. Theres nothing you can say or do to have your X believe reality is anything other than his imagined conspiracy against him. Ive seen this scenario play out too many times where the poor caregiver continues helping no matter how much the patient complains or fights against whatever they try to do, its a losing battle. As a caregiver you already have a difficult job caring for a patient who has a life threatening illness while temporarily putting their own life on hold, they're carrying the weight of the world on their shoulders. Please do something nice for yourself, take some breaks here and there to catch your breath so you are better able to deal with your stubborn problem patient. All caregivers need a break once in a while, those who have the problem patients even more!

One trick thats helped many caregivers with their stubborn, argumentative patients is to print out individual posts that back up things you have tried to tell your X. This plan usually works great, the best part is it usually eliminates confrontation. Hopefully it will help you to get your patient to do exactly what you want without saying a word. As you read thru the forum, select posts that have info you feel would best work for your X's current issues. Also pick a few posts that back up things you have tried but the X shot it down or situations where he did the opposite of what you asked him to do. Make yourself a nice stack of reading material, posts selected to educate your X about his illness and correct medical info/advice, things he should be doing but refuses. Its very easy to get your patient interested in your reading material. If you can let your patient see you reading the printouts, pretend its the most interesting thing you ever read. The more you can have the patient see you with the print outs, the more he should wonder what you are reading. Now set the stage.... "accidentally" put the printouts some place your X will easily come across them. By leaving them out in the open, yet in a spot thats private enough where your X can pick up the printouts and read them. After your X has seen you reading the stack of printouts, it should pique his interest so much where he will be curious enough to read what you were seen reading. This works usually only works once or twice so make sure for the first reading you have plenty of posts printed. Also print tons od things from our main OCF site. The link is below... or you can click on the OCF Website thats at the bottom right of any page...


Main OCF site... Understanding section


Theres far too many things to include in this post that will help your X. The biggest thing all patients have in common is the better they do with their intake, the easier everything will be. Patients who have lost alot of weight are patients who have NOT met the minimum daily intake needs of 2500 calories and 4-64 oz of water. Those are the bare minimums patients can get away with to go thru rads. For someone who has lots alot of weight probably feels horrible due to malnutrition and dehydration. Its surprising your X has not been hospitalized for this with losing alot and not meeting his daily intake minimum requirements. For your X, he should be taking in even more to help build himself back up! Im sure when reading thru posts you will see me discussing this over and over. Intake is one of the few things patients have control over. Too often patients feel everything is out of their control and they have no choices about anything. When they find something thats optional, they will usually select the wrong choice just to feel like they're back in control of their life. I seriously doubt your patient knows enough about nutrition to create his own mix for tube feedings. Plus he knows nothing at all about the tube as far as what foods speed up its breakdown, which foods will clog the tube the most and what should be refrigerated and what doesnt plus his stomach may not agree with the temperature, consistency, ingredients, time of day hes doing feedings, or how fast he is doing the delivery of feedings. What Ive seen fixing 95% of all tube feedings that fail have in common comes down to either the speed of the feedings and/or the thickness of the formula. Slowing down the feedings and adding water to the formula should solve his stomach issues. He should start at a very slow speed (can only be done by using the pump!) and add about a quarter container of water for every can he uses. Its best to use the 1000ml bags with the pump which can take 3 cans plus some water to thin it out to run about 50 or 60ml per hour. This is going to be very different than what he has done in the past by doing feedings in only a couple minutes here and there. His doc can write the prescription to get a feeding pump and all the supplies to go with it. A local medical supply company will bring everything (plus expect a nurse to pay a visit too) necessary like the hospital pole, feeding pump, bags, 4x4 gauze pads, tape (ask for paper tape, other tapes can cause skin issues), a backpack type bag to make the pump and feed portable to go along with him hidden, everywhere he goes running the pump all day.

Please ask questions and we will do our best to assist you or at least point you in the right direction. Hang in there!!! You both are almost thru the worst of everything and will have better days very soon.