Loss of appetite

[faithandlove]

I am hungry in the morning and have a bowl of cereal, and I have a sandwich for lunch. My problem is dinner. I don't feel like eating any food for dinner. Sometimes I take one bite and then stop eating. I actually feel nauseous at the thought of eating. This makes my CALS, my husband, very upset, but I can't help it. I have lost about 20 lbs. since June 2016.

I have the Peg tube, and he said we better start using it, but I can still swallow and chew, although I bite the inside of my mouth a lot. I did not get the Peg tube for food - only for medicine. Now I feel my husband will insist I use it for food. Also, the doctor found an ulcer when he performed the surgery for the tube.

I have been progressing quite rapidly. I can no longer walk, and my right hand, pointer finger is bent. My speech is changing. I need assistance with getting in and out of bed, help with toileting, have sponge bathes, and help getting dressed. I wear pajamas all the time now because I have no energy getting undressed and pajamas put on me. I worry about my husband more than I do myself, but I am not depressed. I just don't want to live like this.

So now I have to ask what is my point to this new thread.

Could my loss of appetite be because of the ulcer, or is this typical for ALS patients? Could it be in my head because I don't want to prolong the inevitable?

I do plan to have smoothies and drink Boost.

Hugs,
Deb

 

[lgelb]

Deb, all of your hypotheses are possible and none is mutually exclusive. It is also possible that the energy you expend during the day on everything from breathing on up is so much greater than your intake that your body can't find hunger at dinner time. Nausea/anorexia can also reflect respiratory insufficiency -- are you on BiPAP? How is your sleep?

It seems like you are at a crossroads and looking for an opt-in or opt-out plan. It's for you, not your husband, to decide when and how you eat. And though the consequences of those choices fall on both of you, though differently, they're still yours to accept.

At some point, though, not choosing becomes a choice, e.g. there is a point where malnutrition isn't reversible and/or accelerates disease progression. IMHO, it's always better to have chosen than to have become fortune's wisp in the wind.

Take some time to consider what you want the rest of your life to look like, what you want to accomplish with it, talk with your husband, and plan that life-to-death together. If there are medical issues in the way, talk with your clinic team. Try to "get to yes," but if you can't, the trumps are yours.

Best,
Laurie

 

[Jhill]

My husband refused to get the peg.

When I felt he wasn't getting enough calories, we switched to the high calorie boost & added coconut oil and ice cream. He would have one twice a day.

Hugs
Joan

 

[KimT]

Deb,

Since you do seem to have somewhat of an appetite in the morning, why not try loading calories at breakfast and at lunch? I was never a nighttime eater and that just might be your body's way of telling you that you will sleep better on an empty stomach (I know I do.) Can you replace the cereal with a high nutrient blender meal with some real nutrition in it (coconut oil, high quality protein powder, and some fruit.)? You can add nut butters instead of fruit and easily get your calories up to 1,000 from a nutrient dense shake alone. Being malnurished will zap your energy. Is there any food that appeals to you for lunch. Comfort food like mac and cheese, mashed potatoes, or something else that will give you both protein and calories. If you like sandwiches, maybe a tuna salad sandwish with lots of mayo and an avocado sliced up on it?

Like Laurie said, these decisions are yours to make. Sometimes depression can sneak up on you and doesn't necessarily manifest in sadness. A small dose of Remeron might make you sleep good and stimulate your appetite. They use it off label for weight gain and sleep.

I'm sorry. I wish I could do something to help. Are you still getting out and getting sun on your eyes?

 

[faithandlove]

Thank you all for your words of wisdom. I use the trilogy for a 2 pm nap and at bedtime. I actually look forward to bedtime, and I sleep very well. I have not been outside for over a week because it has been raining or snowing outside. We are expecting major flooding this week. Once this weather mellows down, I will get out.

Kim, eating more at breakfast and lunch is an excellent idea. I'm always hungry then, just not dinner time. I'll have nutritious smoothies for dinner.

Laurie, I am at a crossroad. I feel so much gratitude for all that my husband does for me. He has taken over all the responsibilities, and I may need help for my physical problems, but I'm here mentally. I have lost so much of my independence that I forgot that I am still in charge of how I wish to proceed with this disease. My husband and I will need to talk.

Thanks so much,
Deb

 

[Kathy K]

Peg,

I'm sorry you're going through this. I used to have no energy to eat more than a mouth full for dinner, despite being hungry. I lost 45 lbs.bringing my weight down to 95 lbs. I got a peg and supplement with liquid hope.

For dinner I have creamy soups using heavy cream. Takes almost no effort. Smoothies incorporating heavy cream, ice cream, avocado, coconut oil, nut butters. I have a delicious Frappuccino recipe I'll share if interested.

Not trying to influence you one way or the other, for I understand not being sure you want to live this way. I feel like that sometimes especially when I think about the future. But as a person who used to need to lose a few lbs., and now is trying desperately to gain, gaining is a lot harder with als.

I wish you the best.

Kathy

 

[affected]

One thing I would say is that not eating enough affects progression immediately, not later on.

I totally agree that it is the PALS choice. I would say that discussing this and being a team with your husband will be of great benefit to you both. It's natural he wants to see you eating all you can. If you don't talk it through he may feel it's his role to keep at you about it.

I would say that you want to think this through carefully, as has been said, your choice not to eat anywhere near enough is going to have an impact. Let it be a conscious choice, don't let yourself just waste away without meaning to.

 

[faithandlove]

My husband and I talked and he told me he was in denial. He said he does not want me to die but he understands that I have accepted it.

We decided to load up on calories for breakfast and lunch. I'm at my ideal weight, which is great, but I don't want to waste away. It's dinner time right now and I cannot stand the thought of eating anything. There is always room for ice cream though.

Hugs,
Deb

 

[KimT]

Deb,
I'm glad you talked with him. I found some delicious Greek frozen yogurt that has 24 grams of protein and 600 calories in a pint. They have it in all the grocery stores. It is delicious and is a good protein boost. Tastes just like good quality ice cream and it would be good for your night meal!

 

[affected]

Deb ice cream is one of the important food groups for PALS!

Think calories, not nutrition.

OK nutrition has it's place in importance for you of course, but calories are far more important. PALS should eat as much of anything they want.

So if you want ice cream of an evening, and you want chocolate or caramel topping or anything else, do it!

I'm so glad you and your husband were able to talk about this. Start making your conversations around how much quality of life you can have for as long as you have, instead of how long you will have.

 

[4tloml]

As I'm reading this thread, my PALS is next to me eating a bowl of ice cream with fudge on it for dinner. He did have a bowl of split pea soup earlier.

He also got his PEG primarily for medication, Deb, but as eating became more fatiguing the doctor recommended he eat for pleasure...whatever he wants whenever he wants it, and then get his nutrition through the tube. He has been very frightened of losing any weight so this has worked for him. (Although after seriously choking on the foods he was insisting on eating, I'm now only preparing him pureed or creamed foods, scrambled eggs with cheese and ice cream.)

I'm so glad you're talking with your husband about your wishes and you've heard one another's concerns. Laurie's so right about consciously living life on your own terms! Bravo to that!

 

[faithandlove]

Yes, ice cream is my favorite too! My choking has stopped, knock on wood, for some reason. I starting using a diffuser and use Peppermint oil, and this may be why.

I had a bowl of Cream of Chicken soup for supper, took one bite, and I did not want anymore. I knew this would upset my husband, so I got out the salt and I liked it a lot better and finished it. I seem to crave salty food. I love potato chips, but eat just a small amount.

I don't want to lose anymore weight either, and I don't relish the thought of starving myself to death. The ALS doctor told me to eat whatever I want too. So ice cream, especially hot fudge sundaes, will be eaten daily.

Hugs,
Deb

 

[ShiftKicker]

Deb, have you experienced a reduction in being able to taste things? That's what occurred to me when I read you're ok with sweet stuff and you used a whole bunch of salt.

 

[faithandlove]

Yes, I have, Is that a symptom of ALS? I do eat candy and potato chips. Even some candy, that I used to love, like licorice, does not taste right.

 

[ShiftKicker]

I don't think it's a symptom. I could be wrong though. Perhaps just a thing that happens sometimes?

I experienced a change in taste when I started taking a new drug recently (it made coffee taste terrible- SO SAD!). It took me a while to figure that out- and it definitely affected my appetite.