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Hi Christine, I have been taking care of my husband, ex actually, since mid April. His last rad was May 13th, he had 2 of the 3 planned chemo treatments. He is also in the 5% (according to the Dr) that has severe, heavy secretions. Still. The Aspirator tube is too thin and weak to actually suck out the phlegm. He ends up gagging, coughing and basically puking up huge globs of it, and it smells horrible.
He has a peg tube and from the beginning it has been a battle to get him to take in the recommended amounts of food and water. He's lost so much weight. The doctors now have us going in Tues and Fri every week for IV fluids. We just got a sample of a different food, supposed to be more easily digested. And they started him on Amoxicillin, thinking the color and odor of the mucus indicates infection. Of course one of the side effects is diarrhea! Which he's been having on and off for the last couple of weeks.
He believes that the tube food is what is making him sick. The dietitian last Friday mentioned using a pump for feedings instead of fighting to do more gravity feedings during the day. He's now thinking about it, which shocks me! He also says that soy does not get along with him. And apparently that's in all the commercial tube feeds. I think he wants to talk to the doctors about making his own, he has a super juicer blender already.
I just feel like I am failing him! I was really pushing him to do more foods, we got into big fights, then I was going to leave and bring in homecare. He did not like that! He doesn't remember a lot of things he's said, I am used to that - he was on Hydrocodone years ago for his back, and was very nasty then not remember.
This COVID has actually been a blessing! My job has been relegated to working from home until the Governor clears every county. I live about a 5-6 hour drive from him, but can work from here just as well.
I guess I forgot why I started to write! I just feel like such a failure as a caregiver because he's not getting better, even worse some days.


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I had typed something out for you and poof..it disappeared.

I dealt with someone who refused a feeding tube...prideful. I finally got to the point where I said "I'm done". you can't help someone who won't help themselves. He spent days in hospitals due to
dehydration. Lost 60 lbs in 2 months.

The stress became less on me once I stopped encouraging water and taking in formula. His body, his choice.

He is on the second round of OC now. I don't go to any appointments because he told me I wasn't helping him (I was telling the medical teams the truth) so I'm hands off on all of it this time unless he needs a driver after a procedure.

I wish you well. Take care of yourself!


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Jun 2007
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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.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Thank you Christine! When we're with the doctor who told him he needs 3,000 cals for healing, he blanched and said he only needs 1500, what he was doing before he got sick/started treatment. Dr explained that his body needs so much more for healing! He said he can't get that much in his stomach in one day! Dr said he'd be happy with 2,000 cals then, ok? Agreed.

But. Get home and only wants his regular protein shakes he drank before working out. The tube feed is too heavy and makes him sick. Try telling him he needs to take the reglan meds half hour before feeding. He just HATES having to access the tube and sit there while I pour stuff in! Only wants to do it couple times a day. And just wants me to put everything in at the same time and hurry up, instead of spreading it out.

Today he says he doesn't think he'll ever get better. I reminded him about the 3,000 cals needed. But he says he can't . I said let's try another formula. But he says he's sick of being a Guinea pig. He thinks he can just hold on with taking his protein drinks until he can start to swallow again. But complains that he can't swallow, it hurts too much. Dr is really worried about him not regaining the ability to swallow again and being a high aspiration risk.

Asks my opinion about what to take, but then says he doesn't want that.

Worst part now is that my job is pushing for me to get back home and get back to work in next 2 weeks since my area is going Green. No reason to work from home anymore. He will have to come with me. And that will be a real joy! 5 to 6 hour drive. He will have to do the stairs for the bathroom, which is a change. Plus I will be gone all day most days. So less feedings!

I just don't know.


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i lived your world. i posted some above.

mine is on his second round of cancer. he survived the first one even with refusing to take in fluids most of the months he was sick. he went through a few more hospitals stays in between.

I had to let it go. the stress on you is unfair. Take care of yourself.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Oct 2012
Posts: 1,275
Likes: 7
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My husband who had to take all his nutrition by tube told me that he did feel full and that I had to give him time to let the “food” go down first. So, it’s not as simple as just pushing all those syringes or Ensure and water down in one go.

My husband could not swallow at all after radiation due to scarring in his esophagus. Eventually he got a doctor to re-open his esophagus. Even then, he could only take in soups, tea and food in liquid form. Ensure continued to be his main food. The problem was he developed silent aspiration and the liquid he drank went into his lungs. He ended up with severe cases of pneumonia. The first time he was in hospital for 16 days and the second bout took his life. So, as far as doctors are concerned, losing the ability to swallow is a very big deal. Please let your partner see his response so that he’s aware of the seriousness of the situation he’s in. If he wishes to pm me for further information.it’s fine too.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.

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