Feel like I'm dealing with a child

[ruthiep]

My frustation level is reaching a new level! Obviously I don't know what Scott is really feeling facing this disease----it must be truly frustrating and scary. I only know that from my end I'm ready to choke the hell outta him. He KNOWS that he needs to eat! He's so proud that he's gained 6 pounds from drinking milkshakes with protein powder w/bananas. Kuddos, that's great for breakfast. However, he's not exactly a "big" man-he needs to eat dinner, he's looking pretty puny. Unless I'm here to cook something and continually prod him to eat----he won't take the initiative! I won't even get into the conversation I had w/ my 23+ year old daughter who still lives w/ us about ensuring that she cooks extra food (THAT I BUY) so that her Dad eats when I'm outta town for the night! I got busy this evening trying to buy groceries, pack and overall get everything together so we can leave for the beach in the morning.....GUESS WHO NEVER ATE! Are you kidding me? Even my oldest grandson (he's only 3 and 1/2) knows he needs to eat! I'm trying not to be ugly, but damn....sometimes it's like dealing w/ another child....Okay, I've vented for the evening!

 

[Atsugi]

Ruthie, come on. You know better. It's HIS stomach. Let him decide what to do with it.

You can do everything in the world FOR your PALS, and accomplish nothing, if you don't remember that the primary problem with ALS is "control."


A PALS would benefit emotionally if we would do what THEY say. If he won't eat, at least you know that he's making decisions and is in control of something.

 

[ruthiep]

I hear what you're saying...and I realize I can't control alot about this scenario---however, I want him to stay as healthy as possible for as long as possible! I realize that he's in the driver's seat in this rodeo, but I'm a pretty nasty "back seat driver". After all, I'm the ball and chain that has been around for going on 26 years.....I've got a vested interest in keeping his happy butt around for as long as possible! Hugs to you and hope you and the children are doing okay in this continued difficult time. You've been in my thoughts and prayers!

 

[brooksea]

Well, get used to it! They (pALS) are their own person and you can't force them to eat. I know your frustration! My husband has gone from over 200 lbs at diagnosis to 145. He's now at 155, up 10 lbs in 3 weeks. The only reason he has gained weight is because he wanted to. He freaked out when he weighed himself and decided he would commit himself to gaining weight back. He was an athlete in his day, so he really knows how to commit.

Until he decides he NEEDS to eat, he won't. So, just go with the flow and persuade him as much as you can. I forget if your husband is still walking. The best thing I did was to get a digital scale. If he can stand on a scale and see his weight gain or loss, that would be great.

Maybe you need to start using supplements. Cream has 50 calories in one TBSP. I add that to soups that I put in the Vitamix. You can order Benecalorie (supposed to have no taste) to add to stuff.

So, good luck and have a good time in PC.

 

[brooksea]

Hope my post will show up that went to moderation!

Order Benecalorie and spike his food. Add real cream to soup or gravy Cream has 50 cals per TBSP.

 

[ruthiep]

Thanks C.J. We do use alot of real butter and heavy cream (when he's in the mood to eat and/or cook) He's always been the gourmet chef in the house. I'm struggling to pick up the pieces. Nonetheless, where do I order Benecalorie from? I'm all about spiking some food/drinks/whatever. Thanks much!

 

[Katie C]

Yup, CJ and I are both pretty good at the "hiding calories" thing! Remember that since he isn't active, he may just not be hungry. I found getting Glen to eat Ensure pudding as a snack was helpful. We'd go to Starbucks, and they knew to make him the "Glen special" ... Mocha made with 1/2 and 1/2 with extra whipped cream. Run a web search on the benecalorie, I'll bet you can order it somewhere.

How is his swallowing? You may need to start pureeing things to make them easier to swallow. I can't believe the things I learned to puree.

 

[ruthiep]

Thanks Katie! His swallowing is still good, he's just getting a little lazy I think. Just checked and found out I can get the Benecalorie from Walgreens----I'm fixing to load up on the stuff~Thanks for your insight! I'll probably be pestering you and C.J. down the road. Thanks so very much!

Ruth

 

[blazonr]

oh sister you are singing to the choir here... I agree with the one post about it is his stomach etc... I do find thought that if my guy gets or is tired (exhausted) he is much less likely to eat. And just like a child start enticing him with goodies. The protein shakes help too... they are easy and not as tiring to consume.
Now in all fairness before ALS moved into our home.. if I went out for the day he would not necessarily eat but make a tado about needing to eat when I got home. LOL
So maybe there is some normal .. going on.
Good luck and I am going to seek out the bene stuff too....

 

[brooksea]

order online from Walgreens. have it sent to the store, then p/u there. no shipping that way.

 

[susanf]

If he likes pudding make it with heavy cream instead of milk. Also add it to soups. It really bumps up the calories.

 

[HelenL]

My Dad didn't have ALS but he was skin and bones for the same reason, he just didn't want to eat... for years my Mom would sneak extra calories into everything she made... a sandwich? SLATHERED on extra Mayo, no "lite" in their house... He'd eat Lorna Doone cookies, and put butter on them.

Another trick I know is to puree cooked cauliflower and put it into homemade Mac and Cheese, you'll never taste it. It all had to do with his pickiness, and control... the docs would look at my Mom, and she would say I put it out for him, it's his choice to eat. He also got Ensure sent to him from the VA, and she'd add strawberry or chocolate syrup to it.

The saying "you can bring a horse to water..." is very applicable.

Good luck!

 

[Barbie]

The biggest problem in our house is the rest of us not gaining weight LOL! real butter, real cream,cheese on everything, ice cream everyday...my pals has been able to maintain his weight pretty good thanks to hidden calories (and me(pat on the back)) even if he doesn't eat much.

 

[Katie C]

Oh Barbie, are you ever right on that one. It's been a year since Glen passed and Kevin and I are just now getting our own weights back under control!

 

[Miss]

Please don't tell me it's going to take a year! Terry lost weight, and I found it...