Has your dad had his swallowing evaluated by a speech therapist? To make sure that he is not aspirating without realizing it? He might do better on a diet of puréed foods or something like that. He might also benefit from a consult with a nutritionist.

My father likes this thing “Magic Cup” that he got in the hospital. We’ve ordered them for home. I don’t know if it’s better than ice cream in terms of nutrition but it’s supposed to be some sort of fortified frozen dessert.
https://www.hormelhealthlabs.com/brand/magic-cup/

My father who has a Parkinson’s like illness has developed GI problems. I’ve read that sometimes food can sort of stick around in the stomach too long in the elderly which results in an overproduction of acid that leads to reflux. Eating more frequent smaller meals is one way to deal with this but if there’s any sign of heartburn or reflux I would get on PPI medicine quick because it can turn into a real nightmare. I know this from experience.

Swallowing pills can become an issue and one advantage of a G-tube is that medications can be crushed and delivered through it.

Finding care at home with a G-tube can be difficult because agency aides will not want to do it. Despite the fact that, as people have said, random family members are expected to do it after a 5 minute video….A non-licensed helper hired through informal word of mouth etc wouldn’t have to worry about tube-related legalities

My "experience": my mom has Parkinson's now and has lost a good bit of weight since her diagnosis b/c it takes her Soooooooo Looooooooooooong to get each bite to her mouth. Definitely things that have to be cut with knife and fork have to be cut up for her. When I am there, I also cut things into bite sizes, that I typically would not (salad) for everyone. I'm not sure how much she lost, probably 20 lbs. Early in her diagnosis she was doing a LOT of working out - exercises prescribed by PT and walking. So the slow eating + exercise = she lost a lot. She has declined a lot and sometimes has to be fed by one of us. So I can see how a patient could lose a lot of weight.
My child had to have a g-tube as a toddler - child did get an infection at the site (hospitalized for that!) and it came out probably 3-4 times accidentally. Child also had a LOT Of ongoing skin irritation and issues that were hard to deal with. Yes, I was SHOCKED that they showed me a 5 min VIDEO and sent me home to care for my child! We did have a visit from a home health care nurse the next morning who did show me how to use the equipment, but it was unnerving to start with (and does involve a good bit of fiddly parts, to the point of PP whose caregiving mother has arthritis).

OP, it sounds like the Boost shakes and efforts to just get more calories into your dad are promising!!!!!!! If he gets tired of the sweet shakes, I am sure you can find some good savory or less sweet options that you can blend up as smoothies at home. I think sometimes gastro just defaults to pediasure, boost, etc., but you can make or order things that are actually healthier. I had to have jaw surgery and remember I got tired of so many sweet smoothies after a while. There are also lots of other good high calorie foods that are soft (easy to eat) - mashed potatoes, mac and cheese, scrambled eggs, etc. My mom with Parkinson's does also struggle with constipation so she does do daily Metemucil and Miralax, quantities per dr suggestions. PT really is life enhancing. I'm sorry he won't do it! The folks mom has had have been very experienced and sensitive to her condition. There are some gyms especially for Parkinson's folks, like Rock n Box!

My dad with a Parkinson’s like syndrome got a g-tube recently because he was mentally with it but had deteriorated significantly physically, including fast weight loss.

The tube has been somehow pulled out twice, when my Dad was at rehab. I have no idea how. I don’t think he did it intentionally!

He cannot use the g-tube to feed himself —someone must do it for him. My mom, while willing, has arthritis, etc. His having it has made it significantly harder to care for him at home/arrange care. We were given a cursory 20 minute tube education at rehab and sent home with instructions to do bolus feedings 5x a day. It wasn’t at all ok.

I think hospitals/rehab must assume that someone on a feeding tube will be in rehab/nursing home, not at home. Or, if not, that he could operate the tube on his own. Or that he will have nursing care at home. Whether or not a non-nurse aide can operate a tube seems to be a legal gray zone and aides/aide companies don’t seem to want to do it.

I am trying to get nurses in here. Maybe they will come up with a better situation, like night feeding with a pump, or whatever.

But based on my experience, if my dad had been able to eat by mouth I would maximize that *as long as possible.*

OP my Dad really liked the Ensure Strawberry. Reminded him of milk shakes he had when growing up. Really helped. Good luck.

Anonymous wrote:OP not sure if you’re still reading this but on Amazon they sell *very* high calorie Boost. It’s 530 calories each and the chocolate flavor is good. You may want to try Miralax alongside because meal replacements don’t contain fiber.

Load up on butter, cream, sugar on foods also. Cheesecake, peanut butter, and full fat Havana Daas ice cream is also great. You can make or buy milkshakes. The DQ ones are loaded with calories.

Yup, I'm here, was at work-but thanks to everyone who responded!

I'm actually picking up Mom in a few to go to walmart to get a few small packs of Boost High Calorie. Going to let Dad try them before a bulk order. Mom got a little overwhelmed-she actually told the dr yesterday 'Larlo hasn't lost any weight, they weighed him wrong (in April '22)' ...Even Dad looked at her and said, Yes I have lost weight. (the dr is fully aware of the fast 20lb weight loss then and it's a symptom of parkinsons progression). So there's that, it's got to be hard watching your dh of 57 years decline. But we actually did stop for DQ after!

Anonymous wrote:

Anonymous wrote:Hi OP,

My boyfriends Dad had a feeding tube. I'm not sure if it that is the same as a G tube.

His Dad was at a later stage alzheimers when they had the surgery.

His Mom would hook the feeding tube up at night and it would run all night.

The negatives were more Mom associated. I think there was a pump involved and the process was around 12 hours. Sometimes if Dad rolled over or moved the wrong way in bed then the feeding tube would become unattached the the food solutions would spew all over the bed so Mom would have to do cleanup.

Since the Dad was later stage alzheimers he was not able to communicate any negatives, if any. The Dad was unable to consent to the surgery.

I'd recommend a second and third opinion.

You might ask for a consult with a dietitian for additional options.

That sounds like a very bizarre setup. I’ve worked in home for years and had several g-tube clients. Feeds usually take 20-30 minutes max to run into the patient from a gravity bag. I’ve never heard of an overnight drip and cannot think of any advantage whatsoever to drawing the feed out to such an extent nevermind the potential for mess of having it all attached while in bed sleeping.

Clearly you are inexperienced then. Anyone who is familiar with the use of feeding tubes knows that overnight feeding as a very useful and commonly used option. It saves considerable time (because many people with PEGs need longer than 20 minutes to feed) and enhances quality of life. There are videos that explain this. Before you sound off on something you clearly know nothing about, perhaps you should take the time for a cursory Google of the subject.

Anonymous wrote:

Anonymous wrote:Hi OP,

My boyfriends Dad had a feeding tube. I'm not sure if it that is the same as a G tube.

His Dad was at a later stage alzheimers when they had the surgery.

His Mom would hook the feeding tube up at night and it would run all night.

The negatives were more Mom associated. I think there was a pump involved and the process was around 12 hours. Sometimes if Dad rolled over or moved the wrong way in bed then the feeding tube would become unattached the the food solutions would spew all over the bed so Mom would have to do cleanup.

Since the Dad was later stage alzheimers he was not able to communicate any negatives, if any. The Dad was unable to consent to the surgery.

I'd recommend a second and third opinion.

You might ask for a consult with a dietitian for additional options.

That sounds like a very bizarre setup. I’ve worked in home for years and had several g-tube clients. Feeds usually take 20-30 minutes max to run into the patient from a gravity bag. I’ve never heard of an overnight drip and cannot think of any advantage whatsoever to drawing the feed out to such an extent nevermind the potential for mess of having it all attached while in bed sleeping.

*home healthcare, that is

Anonymous wrote:Hi OP,

My boyfriends Dad had a feeding tube. I'm not sure if it that is the same as a G tube.

His Dad was at a later stage alzheimers when they had the surgery.

His Mom would hook the feeding tube up at night and it would run all night.

The negatives were more Mom associated. I think there was a pump involved and the process was around 12 hours. Sometimes if Dad rolled over or moved the wrong way in bed then the feeding tube would become unattached the the food solutions would spew all over the bed so Mom would have to do cleanup.

Since the Dad was later stage alzheimers he was not able to communicate any negatives, if any. The Dad was unable to consent to the surgery.

I'd recommend a second and third opinion.

You might ask for a consult with a dietitian for additional options.

That sounds like a very bizarre setup. I’ve worked in home for years and had several g-tube clients. Feeds usually take 20-30 minutes max to run into the patient from a gravity bag. I’ve never heard of an overnight drip and cannot think of any advantage whatsoever to drawing the feed out to such an extent nevermind the potential for mess of having it all attached while in bed sleeping.

OP not sure if you’re still reading this but on Amazon they sell *very* high calorie Boost. It’s 530 calories each and the chocolate flavor is good. You may want to try Miralax alongside because meal replacements don’t contain fiber.

Load up on butter, cream, sugar on foods also. Cheesecake, peanut butter, and full fat Havana Daas ice cream is also great. You can make or buy milkshakes. The DQ ones are loaded with calories.

Hi OP,

My boyfriends Dad had a feeding tube. I'm not sure if it that is the same as a G tube.

His Dad was at a later stage alzheimers when they had the surgery.

His Mom would hook the feeding tube up at night and it would run all night.

The negatives were more Mom associated. I think there was a pump involved and the process was around 12 hours. Sometimes if Dad rolled over or moved the wrong way in bed then the feeding tube would become unattached the the food solutions would spew all over the bed so Mom would have to do cleanup.

Since the Dad was later stage alzheimers he was not able to communicate any negatives, if any. The Dad was unable to consent to the surgery.

I'd recommend a second and third opinion.

You might ask for a consult with a dietitian for additional options.

Anonymous wrote:Does he just want to suffer forever? I really don’t get this. Would you do this to your dog?

You are cruel and heartless. You can have quality of life with a feeding tube.

Anonymous wrote:I would never do this for my parent. I would think quality of life over longevity. Are you able to ask your parent about this? If not, put yourself in their situation and consider what they would want. This is not at all a decision for a doctor to recommend. My mom had early dementia. When it was her time to go it was her time to go. She had suffered more than her share. Please investigate hospice care. My mom was in it for 3 years.

Wow!!! You’d “never” do this for a parent? Count yourself very lucky! My dad has ALS and can no longer speak or swallow. Without a feeding tube he’d be dead. Were we just meant to watch him slowly die if dehydration while he’s still fully competent and mobile? How cruel!

OP, I am not familiar with Parkinson’s but with ALS it is strongly recommended you get a feeding tube before you truly need it. There are issues with the anesthesia needed if you have significant breathing difficulties for example which is often the case with ALS. Does Parkinson’s cause breathing trouble? Anyway, it’sa simple procedure though there is some pain and bloating for a few days. It also can take some time to feed for some people, but it’s also possible to do that while you sleep. It is absolutely life changing for some people. It’s also a big help with liquids - it can be very difficult to remain well hydrated, and a feeding tube can solve that.

Happy to answer any questions.

My experience is that a G-tube makes it significantly harder to find paid in-home help for an elder parent.

Some aide companies won’t deal with it at all and say you need a nurse ($$).

Update-we saw the gastro dr today and discussed everything. So, Dad is to drink 2 to 3 high calorie Boost drinks a day, in addition to 3 meals a day and those should be cut up well to make it easier to chew (so he's expending less calories actually eating).

They'll see him again in a month and see if he manages to gain a few pounds. If not, we'll revisit the g tube idea. Dad seems on board with the Boost drinks as 'long as it's not chocolate or French vanilla' lol ok Dad. We think that this is a reasonable plan.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would never do this for my parent. I would think quality of life over longevity. Are you able to ask your parent about this? If not, put yourself in their situation and consider what they would want. This is not at all a decision for a doctor to recommend. My mom had early dementia. When it was her time to go it was her time to go. She had suffered more than her share. Please investigate hospice care. My mom was in it for 3 years.

OP here-I noted in my OP that Dad participates in his medical care and is interested in it, he is concerned about his weight loss and inability to gain (I eat, Doc, I can't seem to keep any weight on-he said). The anemia caused by the malnutrition is exhausting for him and treating it is hard on him (infusions and lots of blood draws).

Before doing something so invasive, I'd get a second opinion.

Some elderly people are anemic, and not because they eat too little, but because they don't eat the right things.
Others are anemic because they have small intestinal bleeds. This is what's happening to my MIL.

Also, take his complaints seriously, but with an informed viewpoint. Patients like him lose weight in the course of their disease, and there isn't a lot that can be done. They need to be kept moving, and have regular physical therapy. That also stimulates their appetite and helps manage constipation. Patients like him will be fatigued, in great part due to their medication for Parkinson's, and those can be tweaked.

I would askance at any doctor who jumps to gastric feeding for that profile of patient. Go see someone else before making that decision.

His primary doc, who suggested it, wants him to get a 2nd opinion from a gastro so we're doing that next week-his primary dr was just suggesting it as a possibility since Dad and us are concerned about his weight. His hematologist has done extensive testing and doesn't feel that he's bleeding, feels that it's malnutrition causing the anemia. He does eat, believe me Mom is a good cook and puts home cooked, yummy meals in front of him everyday ( I see them daily and eat there myself at least once a week). When they were in rehab last year (after they both fell) the rehab place was giving him ice cream 3 times a day LOL
I want to ask the gastro dr (I'm going to this appt) if there is something like formula (not sure what it would be called for adults) that he could drink a few times a day, by mouth, that could give him enough calories in addition to meals. I would think, if that was possible, then it's better than a g-tube. He's soooo thin, no fat at all.

Movement...is an issue. He had to stop a medication (whose name eludes me) that he'd been on for many years successfully, because it started to cause him horrible hallucinations. But it helped with mobility, so he's slowed down even more. He doesn't want physical therapy...this upsets me because I know he needs it and the last 2 drs visits it was prescribed and he won't let Mom schedule it. I agree that it would help with the constipation. I'm going to bring it up in front of the gastro, maybe they can get through to him.

Hmm. The hematologist just gave you a catch-all diagnosis, OP. Essentially your father's body is not working well enough for him to absorb the iron, B vitamins and folate that he's getting through his diet (and probably he's not getting enough of these through his diet anyway). Is there a reason why he's not getting supplements for B12, folate and iron? Iron supplements cause constipation, BTW.

He MUST do physical therapy. This is essential for his long-term quality of life.

I hear you about the medication that causes hallucinations - name escapes me too, but yes, it's hallucinations on one side and mobility block on the other. Sometimes you can adjust the dose of other meds to take the place of this one, and recover a bit of mobility. Does he have a pump that delivers meds through the bloodstream? It's more sensitive than injections and reduces the risk of painful cramps.

I actually had the same thought and asked the primary dr this-dr said that his bloodwork showed good levels of everything. I am going to ask the gastro dr also to see what they say. No med pump, he takes them all orally. I had actually asked the parkinsons drs that he sees every 6 months, if he should have a carbodopa/levodopa pump, but they said no...that he was not a good candidate for it. We see that group in Oct (I'm taking off work for that, thank goodness for FMLA!) and I'll ask about the med pump again.

I agree regarding PT and I'm frustrated that he isn't doing it.