feeding tube at home - what to expect

mikie_gwFebruary 27, 2007


Anyone advise me on what to expect and the care needed to maintain a feeding tube for my maybe 100 - 110 pound dad? I know nothing about feeding tubes nor how they will affect my dad.

Kinda long but ..Background /// excuse spelling...

For ten yrs or so I've been living with and doing full time home care for my now 92 yr old 120 pound dad after he had a heart attack... instant tripple bypass.. which caused strokes while in the cardiac surgery recovery room. One quadrant of his heart pools blood so he;s on blood thinners.

His problem really has been Strokes - Left him with swallowing/balance problems, just general sitting down orientation/balance seems way off,, and limited mobility in all limbs except for one good leg.

Had a cross stroke, one arm and the oppisite side leg.. then it crossed to other side, visa versa. All before he woke up from heart surgery recovery. Plus the swalling problem lots of stroked people seem to have.

Anyhow following that hospital stay they sent him to, and he did about a three month stint in, a nursing home .. this is ten yrs ago - Nursing home was for heart surgery recovery more or less and physical therapy including how to swallow for his strokes ... He absolutly did not get along there, did not like the life there , hates nursing homes now. He'd die before going back into one or shortly after arriving in one.

Actually his visiting doc from nursing home said his life was nearing the end, 'anytime, weeks or very few months now'

- I brought him to his home for his last christmas & to live out the final months left he did have left. I became instant caregiver for a previously fully healthy normal guy that had just reroofed his house with more physical ease than anyone half his age could have, unless of course they were a roofer.

He once home from the nursing home learned to use a walker for a short trip to the bathroom & can remove and put on his pants. (whew, was fulltime in diapers for quite a while, now only part time) He can handle his food utensils. I fix his meals and he eats them unassisted from his wheelchair - shakey, everything cut up small. He can move from wheelchair to bed and back... shaves himself.. about it.

For Ten yrs things go along pretty much ok. Few falls and ER room stitches, one contagious old people pneuoma he had picked up from nursing home they guessed, is about it.

About 5 or 6 months ago he started having swallowing problems. Couldn't get the food down.. a couple of endoscopes determined his esphoficus has quit doing the normal contractions that squish the food down into his stomach.

So he's cut back on food intake and fluid intakes too. He's always teetered on dehydration. Doenst like to drink because it'll make him need to pee more often.

Now its slowing getting serious. Weight loss. Probably lost about 20 pounds past six months.

Fast forward to 4 days ago - lunchtime last Friday. He's constipated, had a couple xlax things & a suppository over a few days.. not working. He wants to go to hospital. Constipation killing him, please call 911 , over and over, he suddenly thinks he's too weak to even get into car for the drive to hospital.

Fecal Impaction.. hard stool blockage.. nurse removed.. pooped up a storm. Kept him for observation & swalling tests. Think they observed a lot of his eating abilities. For some reason the tests got delayed. Until today.

Doc called an hour ago,,, he needs a feeding tube inserted before comming home tomorrow, or he needs to call in hospice. He cant swallow well enough to eat well enough to substain life for much longer,,, is what doc has implied. Period - thats the options.


Anyhow I'm headed for hospital to see what dad has to say.. he really is afraid of dying and really is a pretty healthy body.. excpt for this now somewhat sudden swalling deal and his mobility.

I'll have to decide feeding tube or not,, they're make it my call. My wonder is - Can I keep him home with a feeding tube.. I've no feeding tube experience nor know anything about them.. not yet anyhow. Tell me about it please ?


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Swallowing trouble involves more than just nurishment. If he gets food particles in the lungs the risk of pneumonia is high and it can be very difficult to manage. Serious business. The tube will prevent that.

Are we talking peg or ng tube? Both are a nuisance but not difficult to manage. He'll hate either one -- everyone does. And he may refuse....in which case you're likely talking about the end very soon. If you have a good relationship, it's probably time to talk.

    Bookmark   February 27, 2007 at 7:09PM
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One of the nurses said peg & she called it temporary.

Apparently tomorrow they are going with an endoscope down into his stomach and attach while in there a tube. They havent said anything about a nasal tube.

I talked to dad and told him all of what they've said.. he said without the slightest hesitation he wants the feeding tube.

    Bookmark   February 27, 2007 at 8:23PM
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They always call it "temporary" even if it's not. If swallowing reflex returns, OK, but often it never does so don't be surprised.

You will need to learn how to care for entry/exit site during healing and regularly afterward. They will show you, tell you, and probably give you literature. Not difficult but important to keep on top of. After that its just measured nourishment and hydration which is also easy. They will tell you about that, too. Depending on your dad's condition, he may well be able to handle all of this himself. If so, be sure to monitor what he does and how he does it so that you're sure all is being done as it needs to be.

Another change will be oral hygiene. He'll need to brush his teeth, etc., being extra careful not to swallow in a way that will get material in his lungs.

Is his swallowing ability such that he can still handle his own secretions -- saliva; nasal drainage? You'll want to ask them about that, too, along the lines of whether he should be allowed ice-chips or sips of water, for example. There are all different degrees of this condition. You'll want to know what's OK to try and what to avoid. How to tell if ability is improving or deteriorating.

Compared to your previous experience with lack of nourishment, dehydration, and constipation you may regard this change as net benefit. You should be able to MUCH better control all of that with the new tube. May turn out much less hassle than before and your dad may feel more comfortable, energetic, and confident because of it.

    Bookmark   February 27, 2007 at 10:55PM
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Hey, thanks for the info. A bit of the possitives. Hope this fattens him up slowly. Gives him some added go would be great.

Dad's been good with not aspirating or at least knowing when he's at that limit. Not too often or much aspirating in the past but it does happen from time to time. They've put him back on thickett stuff which he was proud to have gotten off of it.

He's had the therapy teaching him the correct way to swallow from 10 yrs ago in the nursing home and always recognizes when he's 'getting choked' and deals with it, sometimes quite loudly. I'm always reminding him to watch his swallowing, tuck the chin.

False teeth, I clean. He's coughing/clearing some now in his seemingly normal manner while in the hospital bed when you sit him up from a prolonged reclined position.

They're giving him a bit of therapy now. Don't think they're walking him often enough though. Says he's loosing his little bit of walker/walking ability. Told him hopefully that weakness is from too much in bed time. He understands that once reminded as to possibly why.

Man, he didn't look good today though. Rough day with swallowing tests/radiology. Wonder if he'll still want his morning decaf ?

    Bookmark   February 27, 2007 at 11:39PM
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Sounds as if you have quite a bit of experience already managing the deteriorating swallow-reflex.

If you are able to better balance nutrition/hydration via the new feeding tube, you may be surprised at the degree of improvement/energy-level. Your description seems to indicate your dad is on the wrong side of a "threshold" and perhaps is capable of returning to the other side. Case-by-case nobody knows until the attempt is made. Seems to me your attitude is just about right. Regular therapy and attempts at physical activity are almost always good and almost always lead to improvement unless the person is very far down. If you are able to get him walking again, that would be VERY good. Hope it may go well for both of you.

    Bookmark   February 28, 2007 at 12:02PM
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Connie Kru

Having your Dad WANT THE FEEDING TUBE, should help alot. If all they do is fight it, it is harder.

    Bookmark   February 28, 2007 at 12:46PM
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Just one more thing....that I'll bet you already know. One of the bigger disappointments among those with tubes is missing flavors and textures in the mouth which previously was a several-times-daily pleasure. Giving that up really grates a lot of people. If you can learn what items with flavor/texture can still be taken safely by mouth, it can really take the edge off of the deprivation. If possible to do safely, it also gives some "excercise" to the remaining reflex and will give you opportunties to see if things may be improving. From person to person there's really no telling what the future may hold.

    Bookmark   February 28, 2007 at 3:05PM
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Hi,I just came across your message. Please listen to me very carefully, first of all don't put a DNR order on your father if they tell you to do so, don't let them put him in hospice unless they give you written proof that he's terminal and only when you're convinced that he's terminal switch him to hospice but DO NOT let them remove the feeding tube and don't let them administer morphine unless he absolutely needs it for pain but find out what your father wants. Trust me when a doctor says theres nothing more we can do thats BS it just means that the cap has been reached on your father's insurance and the hospital is paying out of pocket and i'm informing you that their solution is to euthanise the elderly by dehydration and terminal sedation. Believe it or not this is going on in hospitals in this country. You and your dad will be in my prayers and God Bless.

    Bookmark   April 26, 2007 at 2:26PM
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".....euthanise the elderly by dehydration and terminal sedation. "

This is a true statement. It's a very controversial issue, as most of us have read in the newspapers from time to time. What they don't write is how common it is. The non-publicized cases are the vast majority. "Euthanasia" being a dirty word, it is usually referred to as "allowing a natural death" but, in fact, it is quite often the former. And it happens all the time. Some people say its the flip-side of the abortion issue. In addition to newsprint, there are quite a few court cases some even having to do with attending professionals objecting to the instruction and losing their jobs over it -- or at least being replaced by others that are willing.

I'm very aware of the controversy and I'm not stating my opinion of it. I'm just acknowledging the fact.

I'm also thinking this isn't the topic of this thread and I don't like being a hi-jacker.

    Bookmark   April 26, 2007 at 4:05PM
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Let me correct myself i meant to state that they're practising euthanasia in Hospices but the hospitals and doctors are just as guilty (the corrupt ones that is) the biggest culprits are the HMO companies. If you want to learn more and avoid a tragedy in your family because you didn't know the truth please go to the link:http://www.hospicepatients.org/index.html I'm sorry for digressing from the topic but anyone with an elderly parent or disabled relative needs to know this!

    Bookmark   April 26, 2007 at 4:34PM
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".....anyone with an elderly parent or disabled relative needs to know this!"

I agree. Typically stays "below the radar" in care-giving discussions. This is a perfectly viable topic IMHO. Suggest starting a new thread with it.

    Bookmark   April 26, 2007 at 5:17PM
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He was signed into hospitals as DNR at everybodys urging because of his age and conditions. Nurse initially noted No heroics resulting in Long Term Machine support, feedings Ok .. something like that.

Bit of a ramble / Update...
Dad ended up about two months in hospital - evenly split in 2 different hospitals.
Diagnosis and treatment for dyspagia(swallowing prob), COPD(broncidus), generalized weakness. And he aquired pneumonis almost instantly in hospital. They blamed it on asperation. Which I wouldnt doubt as the nurses and aids didnt seem to keep in mind he had asperation risks.

From so much time in hospital beds, Dad's lost abilities to transfer to wheelchair and what little use he had with his walker to go pottie is gone completely right now.
Old left stroked leg has started pulling up after about three weeks in hospital and he can't seem to control now very much.
He is getting some in home physical therapy, supposedly 60days worth, three times per week - hopefully will get him a bit mobile.

Sent him home from hospital with a catheter, to be removed day one at home by a nurse... He didnt pee all day after she removed it... nurse couldnt get new one reinserted that evening ,,, ambulance trip to ER to reinsert. Apparently no peeing is pretty serious stuff.

ER/Hospital lab called about four days later,,, has a urinary tract infection(Klebsiella). They called in prescription for Horse size pills for 10 days, supposed to fix it.

Still has that catheter - GP doc appointment in a couple days. Maybe he'll tell nurse to take it out again.

Had 2 poops after first arriving at home from Kindred. One massive one. Then five days no poop at all.
Back to ER. They cleaned him out with long tube enema...soft stool/xrayed no blockages . Perscribed 30cc milk of magnesia twice daily.

Tonight will be third day no poop again. Geeze.

First hospital tried about a week of physical therapy right after inserting stomach tube,,, all the while his ankles were swollen big, he was very tired, on antibiotics with pneumonia (MRSA).
All the while in 1st hospital therapy wing he was really sick - that wing apparently is with unskilled nurses? ... finally doc moved him to skilled care room and potent antibiotics. Leg started retracting then. Discovered his feeding tube leaking,, not sealing right at stomach penetration... mechanical fault perhaps... removed old one, gave him a new one.

Hospital Doc gave him a choice after about a month,, Has severe bronchidus(COPD),, Pneumonia. He's not getting better... he could send him home and die with hospice care, or take a very slim chance send him to Kindred (hospital) which specializes in lung desease and phy-therapy,, to finish off a second dose of extra stong antibiotics to see if they could clear the pneumonia,, along with they could give him longer physical thereapy there to try and get him at least transfering back into wheelchair.
Kindred apparently is one of two hospitals in SE with some kind of super extended Medicaid or Medicare which apparently regular hospital was trying to get rid of him because time with insurance was up.
1st Hospital Case managers asked me a couple times about where to discharge him to Hospice while he was still being treated. I would say well he's scheduled for tests to try to fix him, why would you discharge him ?
Anyhow Dad told Doc he wanted to try to get better. That apparently bought him a few more weeks of care in Kindred.
Now he's home,, wow, lots to care for right now. Wish he could get into the car for a haircut and doc visits.

    Bookmark   April 29, 2007 at 11:05AM
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Sorry to hear it, Mikie. I was hopeful before. The compounding of events you describe is very discouraging. Wish I had mo/betta ideas for you. Very sad.

    Bookmark   April 30, 2007 at 4:49PM
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My Father-in-law has and does have a feeding tube. He has a rare jawbone cancer.Long story short. I'm looking for an answer on how to clean,dry and keep the skin right around the tube from chaffing. If anyone knows how plz let me know. I have tried peroxide.Now we r trying ointment with the swab over it. It is still very red and sore. He has had is tube since Feb 7th 2011. I am not good with the computer so I hope this works. Thank U

    Bookmark   May 19, 2011 at 9:27PM
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Lolita, you need to talk to your FIL's doctors and all the medical staff that he has ever been associated with. You can't get instructions like that here, you need help more local.

I'd start by calling the doctor or hospital and please be very insistent and ask for help!

I hope this helps you.

    Bookmark   May 19, 2011 at 10:51PM
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