The Family Caregiver Forums - Food tube

Thursday Sep 9, 2010

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Topic Title: Food tube - info. needed!
Created On Monday July 19, 2010 3:28 PM

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Hope

Posts: 832
Joined: Aug 2008

Monday July 19, 2010 3:28 PM

Hi. My name is Hope. My husband has PD (about 7 years). It has incapacited him tremendously. He is unable to walk, speak, do most tasks without assistance. I am with him 24/7 - unless I am at work - and a caregiver comes to be with him.
Recently, we had his pulmonologist talk to us about a feeding tube - should swallowing get too difficult. (He is a silent aspirator - and has one bout of aspiration/pneumonia already.)
I know nothing about a feeding tube. Can you give me any info??? Does your love one have one? How does it work for the loved one? The neurologist also mentioned a feeding tube - saying that his medication can be put in the tube as well as liquid and food, and that he'd still eat socially (go out with friends). But I'm at a loss - and need some input.
Thanks for anything you can offer. This is all new to me! Be well- Hope

Posts: 318
Joined: Apr 2010

Monday July 19, 2010 10:34 PM

Dear Hope,

I know zip about feeding tubes, but I just want you to know that you are in my thoughts and prayers. You're navigating some tough choices and decisions and trying to do the best you can for your husband. You inspire me!!!

Sending lots of hugs to you,
Gaby

Posts: 832
Joined: Aug 2008

Monday July 19, 2010 10:45 PM

Thanks for your sweet words, Gabby. I don't feel so inspirational, though! I feel pooped! Lonely. And I worry how much time we have together.
This feeding tube thing sounds awfully scarey. The neuro. made it sound like a piece of cake. Eat when you want to! Don't worry about liquid intake or nutrition - you'll get it! Medication can be taken through the tube. Eat when you want to - and just for fun. That sounds too good to be true.
What about infection at the site? What about keep it clean, changing it, adding the medicine and food? What about when he's in the shower???
And it's permanent, I know. At least I think it is. As he stops using the swallow muscles - they will weaken.
He's doing pretty well with food now - but eating isn't fun. It takes an hour to eat a small meal. And he's supposed to put his chin down when swallowing - which he rarely does. I'm always saying, "Put your chin down. No, farther. Good."
I do thank you for writing. It's ok that you don't know about food tubes. I'm GLAD you don't have to think about this!!! Please take care. Hope

Posts: 165
Joined: Jan 2009

Monday July 19, 2010 11:44 PM

Hi Hope- I took care of a severe TBI student for 5 years that had a feeding tube. The tube is implanted into his stomach with a balloon holding it in. A tube is attached to the balloon & this tube is about 5 inches long and is outside of the body. To do the feeds it is a gravity system & you flush with water afterwards. It sounds scary but it does make it easier for them to get the much needed nutrients.

The tube coming out has a cap on it so you just close it & I would tape it closed & then tape the tube to his stomach. Giving meds through it is so much easier- but you can't put solids through it. It's all liquids- the only scary thing was when the balloon that held the tube in place came out- no big deal just had to go to hospital to have it put back in. That only happened once in 5 years. You can't just pour things through fast, it's almost like an IV system that it drips over time.

I hope this helps email me if you have anymore questions.
Jennifer

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I'm 42 feeling like I'm 90

Posts: 1612
Joined: Jun 2009

Tuesday July 20, 2010 1:31 AM

Hi, Hope,

I think what Jennifer referred to is called a PEG tube, which can be used gor gravitation feed, letting the liquid slowly drip into the stomach. It can also be used with a pump. Marina's (morenews1) mother is on a PEG tube for quite some time and she has some experience with it. I will write more about it when I get home.

It is not as scary as you may think.

Best Regards,

Min-Shih

Posts: 1612
Joined: Jun 2009

Tuesday July 20, 2010 1:31 AM

Posts: 66
Joined: Feb 2010

Tuesday July 20, 2010 4:07 AM

Hope, PEG tubes are wonderful for people that have trouble swallowing and is prone to sucking food down into their lungs. Wife been on one for 4 yrs now. It is a good way to maintain proper hydration and food intake. We use a small pump attached to a IV pole with single use bags. It runs for 20 hrs a day at 60 ml per hour. Along with 1000-1200 ml water.
As for the peg tubes placement, it is usually a out-patient procedure that takes about a hour to do. The small incision heals up nicely on most cases. We use a mixture of diaper rash cream mixed up with Maloxx to deal with stomach acid leaking.
Any other questions, feel free to ask.

-------------------------
Constantly choosing the lesser of two evils is still choosing evil.
Master Caregiver for a bedridden spouse due to PPMS.

Posts: 124
Joined: Dec 2009

Friday July 23, 2010 10:00 AM

hi, Hope
yes, my mom has peg tube. and she is still in rehab, so it is used drip system, for dripping thru the night.
but when she will be going home we want to try gravity feeding, using syringe, a few times a day.
i already had training sessions with nurses in rehab facilty.
it is not difficult to administer. we have to split amount of callories per day for a few feedings(3 most likely).
the important thing is not to get air into tube(they show you how to prevent it), and flush it a few times a day, and also after "food" went thru syringe.
the person also has to be upright during this procedure.
i tried that a few times, went fine.
m.

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God help us, m.

Posts: 66
Joined: Feb 2010

Friday July 23, 2010 1:32 PM

Good point about the upright position.(How did I forget to mention that!) Keep the head at least 30 degrees, 45 works better, so the food won't come back up and get in the lungs.

-------------------------
Constantly choosing the lesser of two evils is still choosing evil.
Master Caregiver for a bedridden spouse due to PPMS.

Posts: 832
Joined: Aug 2008

Wednesday August 04, 2010 4:34 PM

I'm sorry I hadn't written. I kept checking emails - thinking letters would come through there. I didn't realize it wasn't working.
Thank you so much for the letters you wrote. I still have questions... but I have to take my husband to an appointment. I'll reread and ask the questions.
Is there any sort of food feeding with a tube - that you just do during meals??? I don't want him to be hooked up to a pole. He still gets out with me. He can walk a bit - holding onto my hands. Then, I put him in a wheelchair when we get to a store. He still goes to swallow therapy, physical therapy, and the Y. How would that work with the feeding tube and a pole????
I have more questions. You all sound so knowledgeable (did I spell that right?)! I'll pick you brains as soon as I can!!!
Thanks again for your help!
Oh, I know...give me drawbacks...things you DON'T like about the feeding tube!
I want to make his life easier - but don't want to take any more pleasures away from him. (He loves cheesecake and vanilla ice cream -which I thicken!). I'm making foods much softer and with more sauces - and he did better yesterday and today. But it's still not easy for him.
Time to take him to an appointment. Please take care - and thanks again! Hope

Posts: 124
Joined: Dec 2009

Wednesday August 04, 2010 5:04 PM

Hi, Hope

he can continue doing all things he does now with the tube.
if it is gravity feeding, there is not "poll" at all. you devide amount of calories for day per amount of meals per day, and use syringe to give him this food.
there is specific food products, doctor will recommend and prescribe it.
he can eat what he likes in between thru his mouth.

even if it is not gravity feeding and "poll" is used, usually it is done during night hours.
this is how my mother is fed now: during night when she is in her bed, but with upper body raised.
So during the day tube is closed and poll is out of the picture. she can go anywhere, outside, for physical therapy, etc.
please let me know what else you want to know about it.
also this is a good article which might answer your questions:
http://www.ehow.com/way_5707983_long_term-peg-tube-feeding-guidelines.html

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God help us, m.

Posts: 14
Joined: May 2010

Thursday August 05, 2010 10:53 AM

Hi Hope

my husband was on a "Peg" tube when he was in rehab- in the beginning he was on it 24/7 but then the started doing it just at night when he slept so that he could get up and do all of his therapies. They did the same thing with my father in law. You can discuss that with the doctor, and let him know that your husband is still a bit active during the day. They will figure out how much your husband will need and work out a schedule with you for the feedings. He may even consult with a nutrionist to make sure that your husband is getting all of the nourishment he needs. Good Luck and keep us posted.

Posts: 121
Joined: Jul 2009

Sunday August 08, 2010 11:05 PM

My mother was on life support for 4 months with both a feeding tube and a trech in her throat for the ventilator. The tube was placed through her nose. When she was getting close to weaning from the ventilator they wanted to place her on a permanent feeding tube through her stomach. Like you, this sounded scary to me. She had failed her swolling test and aspirated. We refused the feeding tube through the stomach. They allowed her to go to rehab for 1 month, where she stayed in a nursing home. They taught her exercises so she wouldn't aspirate. We kept the tube in her nose. Slowly she learned to eat on her own and passed the test for aspiration. I am glad that I didn't let them put the tube in her stomach right away and gave her the chance to rehab her throat muscles so she could eat on her own. Some cases are more severe. But, I do she did not like the idea of never being able to eat food again. Have you checked into rehab with a speech therapist. The exercises they give you can train your muscles not to aspirate. This was my experience. I often wonder if I allowed them to put in the stomach tube she would never have had the chance to learn to eat again on her own. Like I said, some cases are more severe, I'm sure. But I can understand you being scared. The hospitol made me feel like it was a dangerous thing to bring a patient home with a tube. I can tell by reading others stories here, that it isn't so bad afterall.

Posts: 832
Joined: Aug 2008

Monday August 09, 2010 10:05 AM

Hi, Everyone!
My husband keeps me so busy - hardly enough time to log on and say hi!!! OK, here are some questions - from what you wrote to me. And again - thanks a million for taking the time to write.
Jennifer, you mentioned a TBI. What is that??? And you said something about flushing the tube..how? Can I mess up and hurt my husband doing this???
MoreNews...How do you do syringe feeding? I assume you put the liquid in a syringe (no needle!) and squirt it into the person's mouth. But he's on thickened liquidds. Would this go through the small opening?
It was mentioned that a person is supposed to be upright a bit. I bought a large wedge from Bed, Bath, and Beyond. But he doesn't stay on it usually. He rolls to the right and his head comes off the pillow. I wake him and try to get his head back on - but he can't do it himself - so it's a big deal to move him so that he is on the pillow.
We've had a rough couple of days. I'm nearing the "I'm going to scream" mode. My voice is shot. I talk constantly - reminding him to sit up, take big steps, put his head down to swallow, etc. I need to keep quiet - but I can't. But enough of that - this thread is about a food tube!!!
Again - thanks for the info. Stay well- Hope

Posts: 66
Joined: Feb 2010

Monday August 09, 2010 6:45 PM

TBI=Traumatic Brain Injury.
As for everything else, flush the tube with the syringe and water, just don't apply too much pressure, or it will give them gas pains or something like that. Might want to check out some hospital beds. Might save your back from trying to move him all the time. Put pillows around his head to keep it from rolling around, way we got Tiff is a big pillow under her head, and a couple of small ones on each side. The wedge is under her back to raise her butt off the pressure sore, she lays on her side all the time.

-------------------------
Constantly choosing the lesser of two evils is still choosing evil.
Master Caregiver for a bedridden spouse due to PPMS.

Posts: 46
Joined: Jul 2010

Friday August 13, 2010 12:09 AM

I use a wedge from BB&B. I actually have two. My partner does not want to change his bed and can still be functional enough to make a choice on that. When I need to feed him in bed- he is still able to feed himself but I watch- I include a "sit up" pillow with all his other pillows.

With flushing and feeding- remember the words LOW and SLOW. Pressure needs to be LOW, rate is SLOW.

Hit WalMart. Look for pillows with the styro ball fill. The can be molded really easily. Use them anywhere there is pressure. Oldtimer has the right of this- you want to build cushions. Roll up fluffy bath towels or washcloths for extra support.

Hope this helps!

Posts: 66
Joined: Feb 2010

Friday August 13, 2010 12:24 AM

They make queen and king size adjustable beds, kinda on the pricey side.
Might want to google "bed rest pillows", "bed chair".
We got her bedrest pillow for her pressure sores from Walmarts for 15 bucks.

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Constantly choosing the lesser of two evils is still choosing evil.
Master Caregiver for a bedridden spouse due to PPMS.

Posts: 46
Joined: Jul 2010

Friday August 13, 2010 1:25 AM

Oldtimer- it is VERY likely that we will be in hospice MUCH sooner than we expected. That means that I will be back to sleeping on a love seat- but will be able to get a proper bed for him.

Don't underestimate Walmart for the stuff you need. Absolute truth!

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