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.
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.
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)
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.
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.