She is/was very aggressive, but with the meds she has calmed down a lot, but alas her brain is failing her. She is in the last stage of Alzheimer's/Dementia, and she is in a NH. She failed her gastric test on how to swallow and eat, and the next step is this PEG Tube. She is a fidgety person, and I believe she WILL PULL OUT this tube. Realistically how long do these patients live with this tube? I need to get myself ready for the worst.

Why on earth would anyone agree to PEG tube placement for an elderly person with advanced dementia?

I've always felt that when someone with dementia gets to the stage where the eating mechanism is broken (and not temporarily, but permanently) it's time to start palliative care or hospice, not prolong the person's agony.

Can she not have thickened liquids and ice cream? Who has medical POA?
Helpful Answer (12)
Reply to BarbBrooklyn

This is a tricky question. I had the same situation with my Dad. He was in the last stages of Alz, and he ended up having a heart attack and being sent to the hospital. They did get him stabilized, but it was pretty obvious that his organs were fading, and that the end was near. His kidneys were not functioning, his heart was failing, and he was having difficulty breathing.

Still the hospital wanted to put a feeding tube in him.

At the end of life, as the major body organs start to shut down, there is no need for food and in fact it can make things worse for the patient. My Dad was also fidgety and trying to pull everything out.

Pardon me for the rant, but I often think that in this country we don't talk about the process of death. Hospitals are geared towards keeping patients alive even when there's no good outcome possible and they prolong the process unnecessarily. I kept thinking "If this was me what would I want?" Fortunately for my Dad I was able to stop the feeding tube.

One thing I would inquire about is getting her into hospice. With hospice the emphasis is about keeping the loved-one comfortable, often times using drugs to make the process easier. It is more peaceful for the patient and for the family.

You have to use you own discretion here, because we didn't get enough information on your post to know the exact situation with your mother, but I would emphasis that you should go with your gut/instinct here. Don't let anyone tell you they have to do procedures on you Mom.
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Reply to mterpin
shad250 Apr 26, 2019
What hospitals are you referring to? Ones here in NE OH keep patients alive only when it is financially advantages for them to do so. If there is no hope for recovery, they will subtly convince the family to let their loved one go, so the room can be cleared and cleaned for the next person, hopefully who will stay alive.
I think this should be reconsidered. She is in final stage of ALZ/Dementia, her problems could be her body is shutting down. Surprised they are even considering it. If her body cannot digest the food, then it will only cause discomfort. I would request Hospice at this point.
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Reply to JoAnn29

Tube feeding has many risks.
It can cause bleeding, infection, skin irritation, or leaking around the tube.
It can cause nausea, vomiting, and diarrhea.
The tube can get blocked or fall out, and must be replaced in a hospital.
Many people with Alzheimer’s disease are bothered by the tube and try to pull it out. To prevent that, they are often tied down or given drugs.
People who are tube-fed are more likely to get pressure sores.
People who are tube-fed are more likely to spit up food, which may lead to pneumonia.
At the end of life, fluids can fill the patient’s lungs and cause breathing problems.

It’s best to have all the facts before you make your decision.
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Reply to SueC1957

It's a personal decision, but, I'd do a lot of reading before going forward, such as recommendations from professional groups and just what the risks are. Tubes are not really recommended for end stage, terminal dementia patients. Is she on Hospice? Have you been provided with options?

I read a lot about this some time ago, in anticipation for my LO and I was surprised at what I read. It wasn't what I expected, in that the survival rate was not improved and the negatives were considerable. I'm a little surprised a nursing home would suggest it. If you move forward with it, I'd ask about risk of infection, pneumonia, distress on patient, restraints, survival rates, etc. I hope someone will be forthcoming with that info.
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Reply to Sunnygirl1

You have to bear in mind that PEG feeding has been developed not only for people at the end of their lives, but also for babies and children and adolescents and younger adults. It can, if need be, keep a person going indefinitely. It's just a different route to get liquid food into the stomach, after all.

Was your consent needed for this procedure? Were you happy with the explanations given?
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Reply to Countrymouse

with my dad, he was too sick for PEG which requires a small surgery and so they were going to put an NG tube down his throat....I couldn't do it to him knowing how uncomfortable it would be and chose hospice where he died in days - whether it was the disease or the hospice meds is anyones guess...I had a lot of guilt about not putting that tube in given that they also advised to put it in and I said no since he already had a PICC Line, Urinary catheter, bedridden with bedsore, etc....but ive questioned that decision so much - I still don't know for sure whether my dad would still be alive if I put in that tube and continued antibiotics for his heart infection but his prognosis was poor and I felt why scare him anymore...its tough!
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Reply to Mhillwt
worriedinCali Apr 26, 2019
What about your dads quality of life? If you hadn’t gone the hospice route and he lived, what would his quality of life been? From the sounds of it, he would have had no quality of life so please try not to feel guilty. You did something humane and compassionate for him.
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After an emergency surgery, mom was hospitalized for 2 weeks and wasnt eating very well. The surgeon who did the operation recommended a feeding tube since she wouldn’t heal well without more intake. So we scheduled her for the tube. In the queue for the tube surgery the gastro surgeon asked me if mom fidgets or pulls out tubes like an iv. She had just pulled out her iv 3 times so I told him Yes. He said it would be life threatening if she pulled the tube out. She would have to wear a big tight girdle that would protect the tube so she couldn’t touch it. Make sure you understand the ramifications of pulling it out and if this would be a temporary measure until she could eat on her own again or if it would be permanent. We opted not to do it and just keep trying to get her to eat which worked, but her health situation was generally better than your mil.
Helpful Answer (4)
Reply to rocketjcat

I would be very reticent to agree to this, I cannot see any circumstance under which it offers a better quality of life. However clearly that decision has ramifications and you have to decide if you are ready and able to make this decision for her or if you honestly believe it is what she would want in final weeks / months. A very hard decision, but we need to do what is best for our elderly and infirm not what we would prefer. Best wishes to all your family at such a difficult time.
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Reply to TaylorUK

Please read this article before you make your decision.
I think it will explain a lot of your questions.
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Reply to SueC1957

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