Feeling full

I'm visiting my parents trying to get things organized and get them on a schedule. My father needs six small meals a day but keeps saying he's too full to eat much. His first clinic visiting isn't for three weeks. Is this normal and how do u get around it?

I'd love to help you but the question is not not clear to me. How do you get around what?

The issue of eating concerns me a little. You say he "needs" six meals a day. He says he's full. Let me explain what bothers me about that. It seems that somebody wants him to eat against his own desires. One of the major problems in ALS is that the PALS loses choices: they can't choose to walk, can't choose to enjoy anything. And now here's a family that is pushing to take away his choice in what to eat!

I strongly believe in giving a PALS whatever they want, with smiles. They may or may not live longer, but then you have to understand that they might or might NOT really want to live longer, stricken by ALS. Maybe they have no acceptable way of expressing their desires to their family.

Sometimes a family loves the PALS so much that they insist on taking care of the PALS, even when the PALS does not want it. I disagree, and let the PALS decide what their choices are.

If he doesn't want to eat, don't press the issue. He's a grown man of sound mind, and should control as much of his own life as he wants.

Absolutely normal. My hubby has bulbar ALS- and swallowing was so difficult, he lost a ton of weight. He struggles to get 5 boosts down a day. I was nagging until the psychologist at the VA basically told me to back off! As she said, the pals have so little control over their lives, let them make the decisions they can, and eating is one of them. Hard to do when you KNOW they need more calories, but...,it is his choice and I don't want our time together to be me harping on what he needs! Just add lots of calories to what he does consume. Donna

Is he taking riluzole? I found it temporarily ( 3 weeks) made me queasy so little appetite. It went away. Is he having any trouble with constipation? That will do it too. I know he was just diagnosed but depending on how he is it might be too tiring to eat much ( arm weakness swallowing difficulty and or respiratory compromise are all possible factors here.
Maybe he is depressed? Maybe the food is not appealing? Maybe it is just too much food? Maybe the timing of meals is off? So many reasons it could be

Nikki brings up a good point.

If it's a pain to poop, you don't want to eat.

Some PALS dehydrate because they want to avoid the hassle of peeing.

Either way, the PALS calls the shots.

He just started rizulole. He said he wants to eat but he's always full. I'm trying to provide lots of options so he can pick what appeals to him but sometime he can only get a few bites in. He lost 8 lbs in two weeks.

I have a feeding pump. Gets me all I need but never bloated.

That is the advantage to something like boost. You know exactly how many calories he gets. Hard to estimate when he is eating a bit of this, and a bit of that. At 5 a day, my hubby's weight stabilized after losing about 35 pounds.

>I'm trying to provide lots of options so he can pick what appeals to him but sometime he can only get a few bites in. He lost 8 lbs in two weeks.

Fruit smoothie 350 cals 2x / day = 700 cals
chocolate milk/banana/2 tbls peanut butter 700 cals 2x /day = 1400
gazpacho 150 cals 2x /day = 300 cals plus the fiber to keep the plumbing going

total ~ 2,400 cals/day, have lost 4 lbs since not being able to eat Feb/2014

dr's told me to eat all i can even if i feel full. losing wight was bad. she said make your self eat if you have to but don't loss wight. i said right you haven't eaten jane cooking yet. like max is saying lots of cals.

Bear in mind that he was just diagnosed and the stress level is high. I think having a variety of food available is good. Don't be surprised if some foods that your father has always loved don't appeal to him any more.

Is he being restricted at all in his diet? Basically I fix steve whatever he feels like eating. Sometimes its the same thing a few days in a row, sometimes a lot of smoothies. Whatever sounds good so he wants the calories. Butter, heavy cream, etc are back in our house.

Thanks everyone. No restrictions yet. Tonight I made meatloaf, mashed potatoes with butter and sour cream and butternut squash with butter. He ate all but a few bites of the loaf, which I unfortunately over cooked. He asked me to research if boost or ensure could cause food it to taste good. That's different that feeling full which is what he first mentioned. I asked what the problem was and he said he just doesn't have an appetite for food but knows he has to eat.

I found that I had no appetite-could go days without eating-it was stressful to eat-I always wondered if I would choke. I think its the disease. Even now when I can swallow better I have to concentrate on eating-it doesnt give me the enjoyment it once did.

I initially banned my PALS from getting on the scale. Checking her weight was just messing with her mind and adding stress.