Did I do right?

[DeansWife]

We had a appointment this morning with a gastro. for Dean to discuss getting the peg tube. He agreed to it last week. He has ate very little since 1 Jan. This morning he says, "I want some scrambled egg". I make him a scrambled egg and he eats it all. Then he says "there is no need for the tube, I'm eating". I didn't say anything right away. Shortly thereafter, I told him we needed to discuss it. I pointed out how weak he has been because of not getting enough nutrition. I said that as long as he could eat by mouth, we would not need to use the tube. We would use it only if he doesn't eat by mouth. I told him that while he was somewhat healthy that was the best time to get it, not when he gets so weak and malnurished. He shook his head and wrote on his white board he was eating and he did not want the tube. So, I called and cancelled the doctor appointment. We have advance directives and no feeding tube is part of his wishes there, but to me these circumstances are different. Now I'm depressed and disappointed. I know that I'll have to fight with him to eat every bite.

Did I do the right thing? I just didn't feel that I could force him.

 

[cervus]

You're right. You can't force him. I would try to make another appointment though. Sometimes people listen to others in authority! Keep up the great work you're doing. Yasmin.

 

[cubcake]

I'm in the same situation, although not as far in as cancelling an appointment. We've been discussing it too, and my DH has said, No Way! I'm dealing with FTD also, so I'm not sure that he knows what he's saying No to! But I feel the same as you......I'm not going to force him.

Fred has gone so far with his eating after our initial discussion that he's actually put on 6 pounds, after losing about 15 to 25. So, I feel like I have a little time.

Hang in there, and thank you for posting. We are all learning from one another.

 

[brooksea]

If he doesn't want it, you have to go with his wish. If he got it, you would most likely still have a fight on your hands to put anything down the tube. That has been the case with my husband, anyway.

You're doing the best you can for him!

 

[DeansWife]

Thanks again for the support. It's so hard to know that your doing right and not feel guilty about it. He has put on a good show so far today with eating. He had the scrambled egg this morning, about 1/2 cup chicken - n - dumplings and a 1/2 can Pregresso Chicken Corn Chowder. He ate every bite and even downed a half bottle of Boost. We'll see how it goes tonight and forward.... Hugs to all, Janice S.

 

[10steps]

I've been down this road, situation very much as you described, and my husbandnever got the peg. My husband enjoyed cooking and loved a good meal. In hindsite the decision was right for him. He never complained about being hungry and ate what I pureed, as much as he could. It's difficult just like everything else but it particularly got to me maybe because there wasn't much left to lose. He didn't want a peg in the beginning and probably only said yes to appease my concerns with hydration and taking meds. i think he was relieved when the risk of having the peg put in outweighed the possible benefit. He did find out that the generic drug dronabinol was difficult to swallow compared to the name brand Marinol. Apparently the Marinol floats and was easier to swallow lol.

My husband lived with this disease on his own terms - I am so proud.

 

[Barbie]

You did right--he must make his own decisions and all you can do is support him.

 

[Mrs C]

Sometimes the discussion needs to be about nutrition as well. The eggs just don't cut it, as we found out. It depends on his swallowing I guess. Good luck.

 

[LizT]

The way I look at it- as long as our PALS are of sound mind, and as long as they truly understand the pros and cons of a certain decision, then its completely up to them what happens when it comes to their cares. If they know that a feeding tube will help, and not getting one will make them slowly starve, and still choose to only eat by mouth- then that is the choice they make. Sucks big time for us caregivers, but I feel we must allow them to make their own decisions. I couldnt make these decisions soley based on what I want for my PALS- I have no right... no matter what my relationship is with him. Of course I would want my PALS around for as long as possible (luckily, my pals DOES want this too), but if he decided it was time to stop- as much as I would hate it, the plug would need to be pulled.

Just keep reminding yourself that you truly ARE doing the best to your abilities and dont let ANYONE tell you any different. Lots of folks in our lives have opinions on what we should be doing with/for our PALS... but its up to you and your PALS and NO ONE else. Hang in there.

 

[Jason's Dream]

When we first had the meeting with the surgeon, the surgeon said we could set up and run the tests that day and have the surgery within the week. That was a bit too soon for Jason and he needed to process it all. He had never been hospitalized before that, never had a surgery, never been sick before ALS. So all of this was quite scary, and he needed to do it in his own time. He saw the benefits of the tube, and how getting it sooner then later would be the better for him. But, like this whole disease, it was quite a scary process, and he had to process it, and do it in his time. Jason got the PEG tube and only took maybe less then 5 "boosts" down it. It mainly helped with, if he wasn't getting enough fluids, I pushed them through his tube, so his bowels would be easier, and then of course, I put his liquid lexapro, and liquid ibuprophen down it. His last true meal (Thursday night), I made mashed potatoes, purreed beets and purreed carrots, and he ate most of it and said he enjoyed it. The following morning (Friday) we thought he would pass, and he ended up asking for pie. A chocolate silk pie his grandpa had brought from the little mom and pop's store that his grandma use to work at. He ate all of that piece (minus the crust), and that was the last thing he ate. He ate that on Friday and passed on Sunday.

Go with what he wants. Its his last wishes. Respect the way that he wants to go, and be supportive and help him do just that. I know it isn't easy, but you will be glad that you respected his wishes and he went his way.

*hugs*, I know it isn't easy.

 

[tammyg]

You guys are right , you can't force them. I would like tell them though, you have to get it while you can. If they wait to long they will not be able to get the breathing tube back out and they will be stuck with it. (Read Kevlyns post about his mom)(Someone on here said they did not use a breathing tube for them though) They had to do the surgery for my dad real quick (like 20 min) so this did not happen. Like you said he can still eat, even with the tube, you can use both. The extra calories will really help, and makes it much quicker. Don't worry my dad swore he would not get one eighter.
Some insurance companies won't pay for it if they know you can still eat, even if it is apple sauce..

 

[happygardener]

My husband wont even discuss getting the peg,he just tells me not to worry(we all know thats not possible!0.I just dont want to be in the situation that he decides he wants it and cannot have the surgury..But as with everything.I can only repect and carry out his wishes.

 

[pmbenb83]

I feel you definitely did the right thing by honoring with his wishes. Since PALS lose all control of their body, the only thing left in their control are their wishes. Making these decisions seem hard, but if you are doing what he sincerely wants, you will hopefully feel less guilty down the road. (That's what I'm hoping for myself anyway. )

 

[DeansWife]

Thanks again for the encouragement. It just really upsets me when he chokes so much when eating and drinking. But, he says he's OK! Last night he could hardly get his nightly pills down. I mentioned that if he had the tube he wouldn't have any problems trying to take them. I just got what I call "the dirty look"! Oh well, I'll just sit back and wait and see. Maybe he will change his mind and maybe he won't. He has been eating more and has gained 8 pounds back from the 10 that he lost the first 10 days of January. That's something good! Always look for the good in any situation.

 

[kiwisally]

Hi, I have had trouble getting pills down for 6 months. Tried them with applesause, pudding, nothing was a help until this week when found that they went down much much easier with water thickened to a syrup consistence with a food thicken. Hope it helps a bit.