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Any caregiver had to make this decision? Dad had a stroke and had difficulty swallowing. Speech therapist made recommendation to do a nasal tube but they tried 5x and dad refused after 6th. He then had a seizure next morning and whatever consciousness he had was gone. He's no longer able to swallow meds with small spoon of apple sauce. I bought up PEG and doctor ordered the procedure. Am I doing the right thing? Or best thing? Is it too early?

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Some things to consider. You don’t mention your dad’s age, but will the PEG tube improve the quality of his life? If he’s lost consciousness will he regain it? Will it be keeping him artificially alive? Would he want this? Does he have advanced directives? Doctors and families are typically in a keep-the-patient-alive-at-all-costs way of thinking, rather than thinking about their LO’s well-being. Look at the big picture. It’s a very difficult decision.
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Yes. This is an easy way to give nourishment and medication. My husband also had a peg. Has had it since last spring. He has healed enough now to be able to eat,

if you can get a food pump, that will give you alot of relief. And he can sleep while it’s running, but he must be sitting up at least 35%. A good lounge chair or bed that raises & lowers fixes that problem.

you may need to give his drugs thru the tube, so you will need a pestle & mortar which works the best I have found. Add a small amount of water do you can use a large surynge to put in the tube. Remember on the tube, always turn the wheel or you will end up cleaning up a mess!
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Understanding Percutaneous Endoscopic Gastrostomy (PEG)
https://www.asge.org › for-patients › patient-information

PEG stands for percutaneous endoscopic gastrostomy, a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach.
‎What Is A Peg? · ‎How Is The Peg Performed? · ‎How Should I Care For The...
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I think you made a good decision.
Nasal-gastric tubes (tube from the nose to the stomach) are usually inserted by a nurse for the purpose of feeding liquid diet and fluids. It requires no incision but may be irritating to the throat and, even if secured by tape, can be pulled out by a less-than-aware or uncomfortable patient. It will probably then be re-inserted. But each re-insertion heightens the possibility of the tube being even more irritating, not well positioned and causing possible respiratory problems.

The PEG tube is inserted by a doctor thorough the abdominal wall and secured by a stitch or two. It is appropriate for longer term use than the NG tube. A quick minor surgery, usually no general anesthesia is required. Once in place, it's not especially uncomfortable for the patient and not easily dislodged ( making it safer than a nasal gastric tube)
I do not think it's "too early", especially if your father is inclined towards seizures.

Also a PEG can be kept in place as the patient recovers. It can be clamped and hidden in the clothing so that it isn't visible even if he is up and about. As a nurse, I once had a elderly patient (not a stroke patient) who loved to dance. On his 100th birthday he danced with his somewhat younger wife (PEG hidden in his underwear) while amazed TV reporters looked on. (He didn't get to eat birthday cake, though)
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Cover999 Oct 2022
I know you mean well but, 😆

Seriously my mom had one, it was not like the one you described. Hers was hung up similar to the way IV fluids are hung. If she had wanted to get up and move around she'd have to take the, whole apparatus with her. I thought she would get the other option,portable one, but no.

If I had known that it would have been a NO for it.
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Yes! I am a nurse and you are providing the only way for your father to get fluids and nutrition in his current circumstances. The procedure is simple. If/When he rouses and eats on his own, it can be removed and the area will heal over.
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Beatty Oct 2022
If the patient fails to make any recovery, or is assessed as not able to recover & palliative/comfort care is recommended - I am wonderong if the removal of PEG is easy, from the ethically point of view?
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My mother,88, is a two time stroke victim, dysphasia hit 2years post stroke, mealtimes became exceedingly difficult, taking 1 1/2 hrs each meal on average. Her mentation declined, we ( my 91yr old father and I) made the decision to have a PeG tube placed. It has allowed us to help her mentation increase, because without good nutrition no improvement will happen! Do not wait, your father will only weaken!
I will say, there are problems that we are still dealing with though, the number one problem is aspiration pneumonia! We have stopped all oral intake except small dropperfuls of water occasionally, but she still has a terrible time with swallowing saliva.. The average person swallows once a minute, and we have to encourage her to swallow 5x every 1/2 hour at least! The swallowing is difficult for her, but with ALOT of encouragement from us , it happens.
She can now stand (with assistance) and talk, although volume is still a problem. My father now has his partner back, it is intermittent, because she has vascular dementia also, but without the Peg tube they wouldn’t have celebrated their 65years of marriage in June!
Is it the whole answer, no, but the PEG tube allowed there to be a possibility of improvement, and for my Mom, thank God, there has been improvement.
Good luck to you and your dad with whatever choice you make, everything about this ageing thing is SOOO hard, all we can do is try! Hugs, Graceland!!

Addtionally we have not had any infection problems yet, she has had the Peg for 1yr and 5 months. I clean the stoma daily and new dressing around stoma/tube daily. We just had a new tube placed as the old one began to break down… very easy procedure, no anesthesia, dr just pulled original out and put new one in stoma.
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Carevdad: Perchance your father made known his end of life wishes including PEG tube.
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I refused to have a PEG placed when my sister had a major seizure likely related to her Alzheimer's Disease. My Mom had a PEG placed after she had a stroke (my other sister insisted on it). I was against it because there has been quite a bit of medical research showing that PEGS rarely improve morbidity/mortality rates. PEGs tend to get infected, especially if the patient becomes agitated and pulls at it. My view is that PEGs work best when the patient suffers a temporary condition that precludes them from swallowing safely. When the patient is severely compromised and their trajectory is "dim", a PEG artificially prolongs their life. And, it tends to be much easier to put in a PEG than to discontinue the PEG - whether from an emotional or religious standpoint. Gastric tubes also work well for short-term feeding needs.
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Hi, I can imagine this is a tough decision for you. My dad had a possible stroke in 2020 and we were left with the only options of putting a trach and PEG tube. We were hopeful that they'd be temporary and he'd recover. We're going on 2 years now with both tubes still there but he is in a wheelchair now and eventually passed his swallow evaluation so he eats regular food when he's able. We just use the tube for meds and water. I do wish we had discussed his end of life care before he got sick though. I really can't say what the best decision is for you but I just wanted you to know that the doctors can't truly predict what will happen. They aren't God. They said my father would never get out of bed or eat again and here we are. Keep communicating with your dad even if he seems unresponsive. He just may guide you to making the right decision.
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I had to face this with my 83-year-old Dad when he could no longer swallow due to a series of small strokes. Even with a feeding tube, he had suffered significantly and any quality of life he would have, would be gone or greatly diminished. The PEG would have kept him alive, but I knew he wouldn't want to live like that.

I took the decision not to have it done and moved him to hospice. He died 3 days later. I still think it was the best decision I could have made because it is what he wanted. Before you agree to the procedure consider how invasive it is and the significant impact it will have on his life. If there he won't improve and the only reason for the PEG is to keep him alive, consider if this is the best option for him.
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There’s no reason not to leave him with the peg while he recovers, or not. You can still stop the feedings if the diagnosis changes. It’s not a black or white issue. Let it by him time and watch and wait. After a month, make a decision.
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Let go and just give him love. Hospice can carry the load, so that you don't have to.
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A PEG (percutaneous endoscopic gastrostomy) feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall. It goes directly into the stomach. PEG feeding tube insertion is done in part using a procedure called endoscopy. Feeding tubes are needed when you are unable to eat or drink.
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Cover999 Oct 2022
..and to make money for the hospital and Gastroenterologist
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What is PEG? Enough with the acronyms...spell this stuff out.
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ConnieCaretaker Oct 2022
Google it PEF feeding
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My thoughts are with you. There is nothing to prepare you for the moment you have to make that kind of decision and you will forever question yourself no matter which choice you make.
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My father was 90 when he got sick with MRSA endocarditis and sepsis - he stopped eating and drinking and were going to send him back to rehab for 8 weeks of antibiotics(that might have helped him) but needed a feeding tube,picc line, catheter etc - developed bed sore and was severely agitated ,deliriousand afraid everytime a dr would come near him, etc etc i chose hospice and he died in 3 days(they stopped life saving antibiotics....i have had PTSD from this decision - severe ptsd but i know that if i put in tube and he suffered more and died would have had PTSD from that as well...your dad is young so its differant..my 83 yr old aunt had a severe stroke in Feb 2022(was driving day before) and had brain surgery and was in a coma for 3 weeks.....had peg tube for a few months and then started eating again - but left side body paralyzed...she is now in assisted living, in a wheelchair but eating and drinking and doing ok.....
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GAinPA Oct 2022
You made the right choice for your father.
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A patient in his condition will deteriorate quickly if nutrition and water are not introduced. Without being conscious or the ability to adequately swallow, a feeding tube via abdomen will maintain his nutrition and strength. It will be used for oral meds and hydration. It is far more comfortable for him than a nasal tube, and eliminates the risk of aspiration into the lungs. You certainly took appropriate (compassionate) action. Maintaining his nutritional/medicinal needs will allow time for his health care providers to give a prognosis on his condition and expected recovery. At that time, you can decide on whether continuing a feeding tube is appropriate. That is usually when they reach end stage, hospice care. Be kind to yourself, the right decisions will be hard to make.
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IF there is the possibility (a realistic one) that he will recover then I could understand the feeding tube. And I would do it on a trial basis.
IF there is no chance that he will recover I would not do the feeding tube.

Over the years had your dad ever expressed his thoughts, wishes if something were to happen? Maybe even in an off hand comment about someone he heard or read about. That might give you a clue as to what he would want.
What type of person has he been through is life? Active, independent? would he want to be kept alive via tubes?
Search your heart, your mind. Listen to both, but as difficult as it is, allow your mind to make the tough decisions.
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Sorry that this is your reality at the moment. At the very least I would insist on a different hospitalist. I wish I had done that when my brother went into the hospital in 2019, awake, aware but very weak from bladder cancer treatments and was dead 8 days later from sepsis.

If your dad can communicate with you in any way, then ask him if he wants the PEG tube.

Don't be afraid to stand your ground and ask questions.
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When did your dad have a stroke that resulted in his conditions? I read that he did not have a health directive to make his wishes known, and that situation may cause expensive legal issues if he really does not recover.

With my situation, I've updated with my wishes known with three relatives and had it registered with Kaiser to not prolong my life by machines if full recovery is not expected in one day. That includes feeding tubes.
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help2day Oct 2022
What legal issues are youtalking about? If a patient does not have any advanced directives, the next of kin can make decisions regarding their loved one. First spouse, then children. Never in my years of caregiving have I ever had doctors not listen to family members wishes. No one needed guardianship, etc.
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HI dear...gone through your trial..so sorry about what your dad is going through..the medical team'll do the procedure, obviously, of inserting the peg tube..
Peg tube is a good option in the situation where dad can't swallow.. at risk of aspiration..Not too early..your dad can still be regularly assessed for swallowing..

-These are my recommendations:
-Insist that a " girdle" be placed on top/around after to avoid that your dad pulls it ...
- Peg tube are known to get infected, under ,so you 'll have to daily : check ,clean with sterile water,put small dressing around....Nurses should teach you that..
- you'll probably use a "pump" so arrange in advance the space at home and get help..from visiting nurses etc..so you can get respite..

- Important..Important to Flush with water before and after feeding.
All the best for you& dad..
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Carevdad, any change or improvement in Dad's condition? Sending you kind thoughts today.
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Hi,

My mom is 78 and after spinal surgery has acute dysphagia as a result with no time frame for resolution. Could be weeks, months or never 😢. After two weeks on TPN she and family made the decision to do a PEG tube. I can't believe that doctor said your dad doesn't "want" to swallow!

Sounds like your dad is relatively young and was OK before for his age. Just like my mom minus the intense spinal pain which was was why she elected surgery, who knew this would be the nightmare outcome.

My mom is now in rehab after a month in the hospital, it's been traumatic, she hates it esp at night and in the morning it's like she's gonna have a nervous breakdown. I suspect hospital delirium.

All of this to say I think pending an uncertain outcome go forward with the feeding tube. Worst case he will swallow in a couple days and it will have been for naught. These decisions are very difficult I'm sorry you are going through this. I know my mom's situation is not an exact parallel as she is able to communicate her wishes and we are certain of her physical prognosis, unlike your dad.

The procedure itself was not terrible for her even after all she has been through, that was our biggest fear another invasive procedure...

Will be thinking of you.
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You keep mentioning his bladder infection. Have they tested him recently? These type of infections tend to be more serious in a male than a female. It can become septic and kill. I would have him checked again.
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Carevdad Oct 2022
Yes they have tested him for bladder infection and any other infections in general but he does not have any bladder infection this time, Infection is ruled out
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"You’re also at increased risk of seizures if the stroke is severe or occurs within the cerebral cortex of your brain". From Healthline.com

Watch, wait but keep asking questions to the Neuro team.
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A seizure 24 hours after a stroke can happen. You did the right thing with the feeding tube as dyspagia (spelling) is common after stroke than seizure. Usually it takes about 7 to 10 days for swallowing ability to retun but sometimes up to 6 months.

The speech pathologist should be doing exercises to help strengthen his throat muscles so hopefully he can eat again on his own.

It sounds like the doctor is just writing him off so you will need to continue to be dad's advocate (like you have been doing) and fight for him.
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Caredad, you say that your dad had a good quality of life before this hospitalization.

Had his relentless delusion that your mom was having an affair ever resolve?

I understand your distress at the current state of his health. Has a speech language pathologist been by to assess him?

I would ask for a different Hospitalist to be assigned to him. If you get nowhere with asking nicely, call the Patient Advocate and insist.
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sp19690 Oct 2022
I think dad had other strokes that weren't noticed and caused his weird delusion about his wife. It happens in about 30% of stroke victims.
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I thought I had read dementia somewhere on the post - my apologies. Although UTI can turn nasty, I imagine this history is not of any relevance to the current situation.

If only 76 with previously no other serious conditions or life-limiting disease - well it is all going to depend on the severity of the stroke.

Stroke varies considerably. Some are milder & leave little trace. Some leave slurred speech, word finding problems, a weak hand. Some take all speech, bring hemiplegia, mood disorders.
The most severe will cause loss of consciousness with no recovery.

Get as much info on the severity of the stroke. Then wait & hope Dad wakes up I suppose is all you can do.

Has Dad has reached a time when he needs a PEG to reduce malnutrician while you wait?
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Carevdad Oct 2022
Thanks for your replies. They are thinking of PEG in a few days because he can’t swallow. No one tells me the severity of stroke cause did not show up on CT and MRI unsuccessful cause he moved too much. They suspected stroke, then a seizure the next day and now just laying there not following command. With stroke alone, the next day he could ambulate with assistance from occupational therapist and go bathroom and say few words. After seizure, he is mostly closed his eyes and don’t follow command anymore.
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What does your father want? It sounds like he was trying to say NO to the nasal tube. Call hospice, have them do an assessment/evaluation of your father for hospice care. If your father is able to speak or communicate with head nods , hand squeeze etc. then ask him if he wants the tube feeding? If he is not able to communicate his wishes, has he in the past indicated what those wishes would be. Does he have a living will? Are you the POA? What is his quality of life now, what does he consider a quality of life ? Speak further with his physician and speak with hospice for another option of care.
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Carevdad Oct 2022
I feel that i am at the hands and mercies of the attending physician who thinks that my dad doesn’t want to swallow. I can’t believe that the physician bought up the last admission when we signed out against medical advice. This was only because he has a history of delirium in hospital and he was there waiting and waiting for psych that promised and promised but never came to see him. Psych because he was delirious due to his bladder infection. At our own family doctor’s advice to bring him home because he would develop delirium if he stays longer. Plus he was only given antibiotics which could and he did taken at home. Please don’t use the past against him but i guess it’s too much to ask because the doctor his human and regardless of oath you still judge.
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If your Dads Dementia is pretty well progressed, I would not do a feeding tube. I would call in Hospice and let nature take it course.
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Carevdad Oct 2022
He does not have a diagnosis of dementia. Last time he was diagnosed with bladder infection.
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