I was told that Nepro would be all he needs. It has nutrients and vitamins. Can someone tell me something else he can be fed that won't leave him malnutritioned?
More calories should equal more weight. If you feed more, even through the tube, it should result in more weight. But that won't work if the body isn't using the food/nutrition due to other factors. How old is your father and how did he come to need a g tube? Is it an abdomen peg type? Can he take food by mouth or no?
I guess I left a lot out. He's all kind of sick. 76 diabetes, stage 5 renal failure, heart failure, recent mild stroke and most recent diagnosed with stage 4 prostate cancer that has moved throughout his body. I was told everything thing he was eating/drinking was going directly into his lungs. He has I think a peg, in his stomach and was told he cannot have anything by the mouth. Tomorrow he is having another swallow test but I am afraid that he's not going to pass and will have to stay on the feeding tube. His dialysis facility said he needs to eat he is anemic/malnutritioned, is losing 1-2 lbs per week. He really needs to get his protein back up and pretty much everything else. And he's been in a rehabilitation facility since jan 27. I'm sure I've left out a bunch but my head is so confused these days I'm having a hard time remembering much. thanks
I'm guessing it's normal for the family caregiver to keep thinking and hope that he's not as bad as it sounds. I always feel like I can tell when it's something serious but then usually at some point I'm hit with a bit of reality that there's more than I think or more than I want to admit. The thought of hospice or making him live somewhere else just about kills me. I really don't want to do that to him. Also sometimes I don't want to do this anymore but that guilt will hit me. How dare I feel like this/being so selfish when he is going thru what he is going thru. I am an only child and all of his immediate family is gone. He has no one else.
I agree with willie, with all Dad has going on, he may want Hospice. Maybe have Hospice come in to talk to him to see what he wants. Facilities don't always recommend Hospice. I had to ask. A feeding tube may be prolonging the inevitable. He has lost the ability to swallow. If losing weight, he may not be absorbing the food. I think they can test for that. His body maybe just shutting down. Hospice will make him comfortable and pain free.
Thanks JoAnn. He is actually so afraid of that. So much that when something is wrong and we both know it, he absolutely refuses to let me take him to Urgent Care or the ER because he is afraid they are going to keep him. And each time I tell him, I'm not going to let you do that to me again. If we had just came sooner it probably wouldn't have been so bad and they would have let you come home. But he is good at making me feel guilty.
I am so sorry that you are going through this. Please speak to hospice and utilize the counseling they offer. You will benefit from understanding that your dad has multiple comorbidities and comfort is probably the most you can hope for.
Prepare your heart and head for his passing. Hugs!
My mom has had a feeding tube for a couple of years due to cancer and a trach. The typical commercial formula is, in my opinion, terrible. If/when your dad is home you can blend food with a high power blender, and he can eat whatever he wants through the tube like high calorie smoothies, etc. There are also a couple of formulas you can look into that we like--Liquid Hope and Real Food Blends. Both are good real nutrition--not sugar and soy protein like the others-and insurance can cover. Good luck!
What does your dad want? I've had this conversation with my parents and with all that going on, the feeding tube is definitely not something they would want.
We've discussed the whole resuscitation conversation and what to do when does pass, but I never thought of him ever having to be on a feeding tube. His favorite past time is eating and watching shows about food.
So sorry you are going through this. Your dad has prostate cancer as well as multiple debilitating illnesses. He is using all his calories to maintain his day to day life.
Your choices of tube feedings are limited due to his ESRD. The Nepro formula is made specifically for ESRD pts as a diet supplement.
His dialysis center should have a registered dietitian that you can ask to meet with to ask for their suggestions.
Chances are your father will never gain weight due to the nature of cancer cells taking over his good cells and the fact that cancer is a muscle wasting illness and often people with cancer lose weight. If you haven’t already please consider getting a hospice evaluation.
He can be tired of living with all of these problems. Dialysis itself will exhaust him.
I hope you will consider hospice for his end of life care.
Thank you. Am I really in that much denial. I see him everyday and his mind is sharp and to me he's seems to be doing a little better each time. But with everyone talking about hospice I'm feeling really out of touch.
I was looking over his medical records online and found a recently added the results from a CT scan of his chest. After having to look up what felt like every other term- that's when I realized he has a lot more problems than I knew or thought. Or actually what we've been told.
I was thinking that I should take a copy of it with us to his next visit with his primary. However I have no idea when that will be at this point. What would you suggest?
How is your father feeling in himself? Is he comfortable and as reasonably content as you could expect?
You must have been given an enormous amount of information recently and it must be very difficult to crunch it up and sift out the priorities. Is there anyone on your father's care team who can help you with this?
My husband has a feeding tube and i ask for a feeding that gives the most calories for the least volume. We use 2Cal which has 480 calories. This has sustained him for over 2 years now. We adjust feeding according to his weight and what he eats each day. Whe he eats 480 calories we cut out a feeding. Good luck and prayers sent for guidance.
Feeding tubes have many complications. If he is having one of these complications it can lead to weight loss. For those who are cognizant (such as post stroke but lost the ability to swallow), they are recommended and do very well on tube feeds. For those with end-stage Alzheimer's, outcomes are not good because they cannot self care, especially if bed ridden. (1) Infection. The tube feed site is an open area where bacteria can accumulate and set off infection. (2) Aspiration. They can still vomit and it goes into the lungs. The very thing it is supposed to prevent. Aspiration pneumonia is a very common cause of death with Alzheimer's disease. (3) Diarrhea. It's called "dumping syndrome" whereas tube feeing goes through the digestive track fast. This is especially true with a J-tube which attached into the small intestine. While there is less chance of aspiration pneumonia, the diarrhea can kill your loved one with a urinary tract infection and increase risk of skin breakdown. (4) Feeding tube can get pulled out. .not only that you will put them through surgery to get it put in in the first place. IF they pull it out it will require a trip to the Emergency Room and they have to reinsert it with flouroscopy within 24 hours or it will require another surgery.
---I do not use feeding tube. I seen the research that showed feeding tubes do NOT increase lifespan --.
My mom has end-stage Alzheimer's disease, nearing 90 years old, often forgets how to swallow and "chipmunks" or pockets food. It takes about 1-1/2 hours to feed her. I usually start with a small amount of tea to get her mouth wet. She always loved popcorn so I give her some and that usually starts her off. Still it's a struggle to feed her. So far I manage. She will only eat beans and only certain kinds. I add some soy peanut butter and honey. So between popcorn I feed her. I also use ice cream to flavor her protein drink supplements..and use THICK IT to ensure the drinks are honey thickened. Been doing this over a year and her chest x-ray is clear.
Google scholar will bring up all kinds of evidence-based articles on anything. try to use current ones.
I gave my dad the best protein shakes on the market. Orgain Nutritional Shakes. Pricey yet worth every penny. Order online or found at your nearest health food store.
My mom has jevity 1.5 calorie. I supplement with a liquid protein called pro-stat that I pour into the water flushing the tube (I order it from amazon). Mom was so skinny before I got the tube put in. Now that she gets nutrition, she actually started eating small things again. The protein has helped immensely. Oh I also soak vitamins (multi, B, zinc) in hot water at night and put them through the tube in the morning. Now mom is more alert, she gained weight and doesn’t have that smell (the near death smell). Good luck
I'm really not sure how these feeds work. I hope everyone can see this. I wanted to thank you all for all of good info. I've never really been around anyone as sick as my dad, well my paternal grandfather. Practically the same thing but I was too young to understand it and no one tried to explain it to me. For example I never knew that Diabetes could affect your major organs or that most Dialysis patients don't urinate. And since a good chunk of my family had Diabetes I didn't think it was anything serious. I'm really glad I joined this group or forum. Thanks again
Prepare your heart and head for his passing. Hugs!
Your choices of tube feedings are limited due to his ESRD. The Nepro formula is made specifically for ESRD pts as a diet supplement.
His dialysis center should have a registered dietitian that you can ask to meet with to ask for their suggestions.
Chances are your father will never gain weight due to the nature of cancer cells taking over his good cells and the fact that cancer is a muscle wasting illness and often people with cancer lose weight. If you haven’t already please consider getting a hospice evaluation.
He can be tired of living with all of these problems. Dialysis itself will exhaust him.
I hope you will consider hospice for his end of life care.
I was looking over his medical records online and found a recently added the results from a CT scan of his chest. After having to look up what felt like every other term- that's when I realized he has a lot more problems than I knew or thought. Or actually what we've been told.
I was thinking that I should take a copy of it with us to his next visit with his primary. However I have no idea when that will be at this point. What would you suggest?
How is your father feeling in himself? Is he comfortable and as reasonably content as you could expect?
You must have been given an enormous amount of information recently and it must be very difficult to crunch it up and sift out the priorities. Is there anyone on your father's care team who can help you with this?
They will help both of you.
https://www.agingcare.com/articles/an-end-of-life-conversation-led-by-gawandes-questions-205721.htm
There are also several articles explaining how hospice works
https://www.agingcare.com/topics/90/hospice/articles
For those with end-stage Alzheimer's, outcomes are not good because they cannot self care, especially if bed ridden.
(1) Infection. The tube feed site is an open area where bacteria can accumulate and set off infection.
(2) Aspiration. They can still vomit and it goes into the lungs. The very thing it is supposed to prevent. Aspiration pneumonia is a very common cause of death with Alzheimer's disease.
(3) Diarrhea. It's called "dumping syndrome" whereas tube feeing goes through the digestive track fast. This is especially true with a J-tube which attached into the small intestine. While there is less chance of aspiration pneumonia, the diarrhea can kill your loved one with a urinary tract infection and increase risk of skin breakdown.
(4) Feeding tube can get pulled out. .not only that you will put them through surgery to get it put in in the first place. IF they pull it out it will require a trip to the Emergency Room and they have to reinsert it with flouroscopy within 24 hours or it will require another surgery.
---I do not use feeding tube. I seen the research that showed feeding tubes do NOT increase lifespan --.
My mom has end-stage Alzheimer's disease, nearing 90 years old, often forgets how to swallow and "chipmunks" or pockets food. It takes about 1-1/2 hours to feed her. I usually start with a small amount of tea to get her mouth wet. She always loved popcorn so I give her some and that usually starts her off. Still it's a struggle to feed her. So far I manage. She will only eat beans and only certain kinds. I add some soy peanut butter and honey. So between popcorn I feed her. I also use ice cream to flavor her protein drink supplements..and use THICK IT to ensure the drinks are honey thickened. Been doing this over a year and her chest x-ray is clear.
Google scholar will bring up all kinds of evidence-based articles on anything. try to use current ones.
Orgain Nutritional Shakes.
Pricey yet worth every penny. Order online or found at your nearest health food store.