Eating/g tube

[Tracy500]

My husband shouldn't be eating anything by mouth at all, and have only formula tube feeds. He refuses them. I try and he's like no,no. But he chokes every single time he eats anything. He thinks he can just eat a burger,bun, toppings. Or tacos, all. But he chokes and food gets stuck where we have to use cough assist and suction. But then he says if he can't eat, either should I. He feels if he can't have something nor can I. I said Im Sorry, it's not my fault nor your fault you can't eat, but you can't treat me like this and yell at me.(which I can barely understand him as his speech is very poor) what can I do? I talked to the office and they said he needs to have formula. But I have to call them tomorrow cause I don't know what to do. Also I had my mother in law who helps out so I can get breaks, but she went on vacation 3 wks ago, I need a break fast! Help I won't get a break till next week.

 

[njk0407]

Oh honey I'm so sorry. Like you said this is nobody's fault. Please know that you should not be made to feel guilty under any circumstances. I'm sorry your being treated this way . Big hugs to you! I'm sorry I don't have any advice as I'm so new into this, but just know that by taking care of your husband you truly are a special and wonderful person...just remember that.

-Nikki

 

[affected]

Tracy can you start making only meals that are soft - no tacos or hamburgers. Don't ask him what he would like you to make, just make safer meals?

I realise that even safer meals will elicit choking episodes, but it may help if the things he really wants are not being cooked and served up to others.

I used to have one day some weeks where I could go out while carers were here, and I used to go hide in a cafe and eat this amazing steak burger they make, with home made beetroot relish. I felt too guilty to make so many kinds of meals once Chris could not eat much. I knew that I needed to eat well, and actually I still ate fairly well, just not some of the meals I really felt like.

I did puree every meal I made in the last months as Chris did finally realise he couldn't continue eating textures. But kept eating even puree well past the time he should have been and did end up with an aspiration pneumonia.

It's a hard call. You know what he is doing is not safe, he is blaming you for so much, and you can't force a peg feed on him.

It may be worth changing what you cook, then explaining at every meal (in just a few words, don't hound him with it), that it is not safe for him, but you will help him if he chokes, however you will not be treated as the enemy.

I think you suspect some FTD, and if this is the case, reasoning won't truly work. But sometimes just being consistent can help a little to ensure that you are allowing him to make his choices (albeit poor ones), but you are setting some boundaries too.

As for help, can your ALSA chapter help, or a local church or something, just to give you a little help and time to regroup?

 

[Dave Kerwood]

So Sorry Tracy. You could always use a scare tactic and show him a picture of MY Julie. I am sure if he saw my skin and bones wife he might want to drink the formula.

Dave x

 

[Nuts]

Oh Tracy, how difficult this must be. As with so many situations in our lives, there just doesn't seem to be a perfect answer. I'm especially sorry that he is hounding you the way he is. That does sound a bit like FTD, doesn't it? My heart goes out to you.

Becky

 

[jayswife]

Tracy, I'm so sorry he is treating you like this. And I hope you get some help to make him understand that what he's doing is dangerous. Sounds like he won't listen to you but is there someone else that can get through to him? And make him understand? Hang in there, believe me I know that is easier said than done. I'm thinking of you and wish that you can get some help.
Amy

 

[Angeljo2]

Tracy I to am new here I have in enjoyed reading the post here. My hubby has ALS to as of Feb this year. He has a feeling tube he takes it ok he has a tech to but he still want to eat to . He just got back out of the hospital from having respiratory problems and I know it was from him eating. It is very hard not to give want he wants I try not to but like my hubby his very hard headed. He his in the bed all the time can,t walk any more can,t use his arms or hands I have to read his lips. I and all us here pray some day there will be help for this disease 0