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My 77 year old mom had a stroke which masked her Parkinson’s for years. She is quickly declining and now unable to swallow very much at all. Her weight is dropping quickly. We don’t want her to suffer but we don’t want to prolong her “process”. The staff at her nursing home gave us an option of the Bolus Syringe feed option. Does anyone have experience with this or any other type of tube feeding? Her living will declined resuscitation or life support, but the verbiage doesn’t seem to address feeding tubes. Any info would be so appreciated. Thanks.

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Thank you all so much. Simply the fact that you took time to respond and share your stories and experiences felt like unexpected kindness. The very day I asked the question she was taken to icu for dehydration and the family (6 children) decided the risks outweigh the benefits on the tube. Her doctor fully agreed. She’s not going to get better. I feel for what each of you are facing and I honor the care you are giving to your loved ones. Wishing you all the best and again, thank you all for your thoughtful responses.
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If she is going to have a quality life with the feeding tube, then do it. But if she is declining and has no hope for a quality life, then why prolong her misery. Once you put it in, unless she recovers and can eat on her own, it is my understanding you cannot remove the tube and she then has to die from something else. I don’t believe she would want it if she did not want resuscitation or life support. Prayers to you.
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My father passed the swallow test at the hospital and was deemed able to remove the feeding tube and eat normally, however, he never got the chance for another surgery forced him further down and he opted to refuse all food and water thereafter. He was coherent and determined. He died two weeks after that.
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Bolus feeds are using a large 60 cc syringe where u simply insert the syringe into the end of the feeding tube(feeding tube into the stomach) dump the suggested amount of liquid i to the syringe and slowly let it gravitate into the stomach. You usually do this every 4 hours or as often as the doctor orders. You can crush mess and mis with water and put through the same way, then flush well with water. When you use a machine , this is usually a continuous feed which is a slower way of delivering the feeding but the mach Me does the work. Bolus feeds only take a short time to do, you just don't want it to run in like a river to fast. It isn't hard to do.
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My mother received her feeding tube when it was believed that she had a good chance of recovery from her stroke. She was fed this way for four years as it turned out she never recovered. We had a few changes of formula as she’d develop issues with one, like diarrhea, after a change she’d tolerate the new one fine. This seemed to happen a few times a year, never knew why. Her feeds were 4 times a day, gravity fed, took about an hour each using a bag and IV pole. As others mention quality of life issues, I’d say, sadly, it’s not always an easy call. My mother could do nothing physically, and I do mean nothing, the strokes took it all, but mentally she was complete intact. So we never could reach a point of deciding to starve her to death, not when she was fully aware. Toward the end, when she became non responsive, likely due to another stroke, we did withdraw feeding, but used the tube to keep her hydrated to the end of her life. We’d been told by her doctors that dehydration is always a painful way to die so no one wanted that. I’d say your decision hinges a lot on your mother’s awareness and cognition. Blessings to you in the days ahead
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CWillie made a good distinction between tube feeding (for sustained life) vs. tube feeding at the end of life.

When my father had the tube inserted, it was in 2003, when he was in his mid-80s. He still had a lot of life to live, and he did, very productively. Now he's 99.5 and the quality and quantity of life expectancy are much different, and don't justify tube feeding and the inconvenience it would bring at this stage of life.
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The gastroenterologist who did the tests for my husband gave us a choice of having the tube through the stomach or not; but he somehow managed to convey his negativity for it. It offered many risks as well as a possibly briefly extended life. My husband had many problems. A friend of ours had the bolus tube for feeding after an accident broke ribs and damaged the esophagus; but when she recovered the tube came out.
After we made the decision, the nurse practitioner who served as go-between for hospital and Hospice saw his living will - and said that the bolus tube would be part of the no-heroic-measures to extend life.
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Personal opinion here...
I dislike feeding tubes in a case like this. I think it will prolong life without improving quality of life.
Have you talked to Hospice? I think this would be the time to get an evaluation to determine if she is Hospice eligible. (If she has a feeding tube and goes on Hospice they will continue the feeding tube as long as necessary)
As the body declines the need for food declines. The feeding tube would "mask" the signs that one sees as the person starts to reject food. If you force food once a person no longer needs, wants or requires it you can have all sorts of problems from constipation, impaction, vomiting, aspiration, and the undigested food just sitting in the stomach.
I am sure if the current POLST that is used (more advanced and detailed than a DNR) was available when your Mom made her wishes known she would have been able to be more clear about tube feeding. Now the 3 choices are..
(1)Long-term medically administered nutrition, including feeding tubes.
(2)Trial period of medically administered nutrition, including feeding tubes
or
(3)No medically administered means of nutrition, including feeding tubes.

so you can see the current form addresses specifically terms of tube feeding. What one do you think your Mom would have chosen?

The other thing to consider is ..Will her quality of life be helped? (NOT quantity of life but QUALITY)
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Her stated desire is that she doesn't want life prolonging measures taken at the end of life... I think your decision depends on her prognosis. There is a lot written about "feeding tubes at end of life" and "the ethics of feeding tubes in advanced disease", you might get some insight if you google those topics.
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I have been tube feeding my husband for over 1 1/2 years. We started with the machine to infuse it and it does take a long time. He had a lot of aspiration with that because it was at night while lying down and therefore lots of pneumonia. We now bolus breed him, and yes it is time consuming but I just set the alarm on my phone so I don't miss the feeding. I did ask the Dr to prescribe the feeding with the most calories for the least volume so we use TwoCal HN which is 475 calories per can. This makes for less feedings. I do flush 100cc of water after each can to clear tube. I have never had a clog with this regiment. I am sure the nursing home has a reason for this question. I would ask them which would they suggest and why. Since they are doing the care I am sure they have a preference and for her I don't think it really matters. We changed because of the aspirations and my husband hated to be attached to the machine at night.
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I have been tube feeding my husband for over 1 1/2 years. We started with the machine to infuse it and it does take a long time. He had a lot of aspiration with that because it was at night and therefore lots of pneumonia. We now bolus breed him, and yes it is time consuming but I just set the alarm on my phone so I don't miss the feeding. I did ask the Dr to prescribe the feeding with the most calories for the least volume so we use TwoCal HN which is 475 calories per can. This makes for less feedings. I do flush 100cc of water after each can to clear tube. I have never had a clog with this regiment. We travel, do cruises and still have a life to enjoy. Hope this helps you.
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Bolus feeds are using a large 60 cc syringe where u simply insert the syringe into the end of the feeding tube(feeding tube into the stomach) dump the suggested amount of liquid i to the syringe and slowly let it gravitate into the stomach. You usually do this every 4 hours or as often as the doctor orders. You can crush meds and mix with water and put through the same way, then flush well with water. When you use a machine , this is usually a continuous feed which is a slower way of delivering the feeding but the machine does the work. Bolus feeds only take a short time to do, you just don't want it to run in like a river to fast. It isn't hard to do.
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Hello, I had a client who was in the same state at home. Family puree soft foods in a blender for his wife and went to a local store and brought a syringe that is made for cooking and added the puree for meals that was puree and placed the syringe on the side of his wife's mouth and tube fed her manually. He was just giving her the last quality of life until she eventually passed on. He also added insure or boost to her diet. Good Luck!
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I do. After a long debilitating illness, my father was discharged to home on tube feeding through a PEG tube in his stomach. I'm not sure if it was considered bolus feeding, but it was the only method of nutrition intake. He stayed with me during that time.

I used a large bore syringe to inject a small can of Nestle's Pro Balance canned nutrition (something like Ensure) into the tube, every 4 hours during the day, beginning at 7 am, then 11 a.m, 3 pm, and at 7 pm, when I used an automatic feeding system (an apparatus something like an IV setup). At that time I poured 4 cans of fluid into a bag, then 2 more at midnight or 1 am.

The nutrition overnight was in lieu of staying up all night or getting up q 4 hours to add more fluid. But the bags Medicare provided back in 2004 would only hold 4 cans, and the requirement/script was for 6 bags overnight.

It took about 4 +/- hours for the 4 cans to drip into the PEG tube, so there was no way to get in 6 cans of fluid w/o staying up late.

It was grueling, fatiguing and exhausting. The home care nurse sometimes handled the afternoon feeding so I could take a nap. Everything revolved around the 4 hour feeding requirement.

Occasionally the tube would become clogged. I was advised to, and did use an apple juice infusion to clear the tube.

Meds were crushed and inserted into the syringe.

It wasn't all grueling though. When the first order came, a deliveryman brought in 12 cases of the ProBalance. I had to clear out the entire front closet to store all the cans!

John, if she's already declining and losing weight, I don't know how much the PEG tube feeding would stave that off. But it would give her a better chance of remaining healthier during the downturn.

I would very, very, strongly advise that if you go this route, not only should you be trained by the nurses at the SNF (I was afraid to take on the responsibility, but after two sessions with nurses I realized it wasn't that complicated).

But it would contribute to your own health to have someone handle one or two of the feedings once your mother comes home. Otherwise, you'll quickly become exhausted and fatigued to the point that it's hard to function.

That's what happened to me. After about a month, I was so exhausted that I slept through a 7 am feeding and didn't wake up until 11. And that was the day of a funeral for a very good friend, which I missed b/c I was crashing from lack of sleep.

I know that there are other posters here who've dealt with dysphagia, but I believe their primary experience has been with pureeing foods for a dysphagia diet. I think there are some who've dealt with feeding tubes, but am not sure.
If you have any other questions, feel free to post again. I'm still dealing with dysphagia now, with even more restrictions than back in 2004.
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John, I am moving your post closer to the start of the forum. Hopefully a caregiver who had this experience can help you.
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