Feeding tube question.

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mytmouz

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PALS
Diagnosis
07/2019
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Pelahatchie
I didnt want to clog up a different thread, so here is a new one...

I am PALS, and in reading the other thread, there were some CALS posts about waiting on feeding tubes, due to their PALS wishes, then they were done. (As I understood while reading).

Is that possible, despite the PALS wishes? (Possibly the PALS changed their mind, and I misunderstood).

I have a living will and specifically requested nothing but pain meds when I can no longer speak/move. At this point, it looks like I will lose limb function first. I dont want someone to go against my wishes when I can't communicate, so this is a concern for me...

I live in the land of the Conservative Christian majority, so the euthanasia option some of you are able to decide on is not available to me...
 
I don’t know how it varies from state to state, but my pals signed an advance directive. He wants no feeding tube, as is he is also limb onset.

I understand that they would not put in a feeding tube, anyway, if breathing is too compromised, but he did an advance directive, just in case, so his wishes will be honored.
 
Great topic. There have been many discussions on this, so I would suggest you do a search on this site. Know what you’re getting into if you decide on a tube or opt out.
“ALS from both sides” offers great information about tubes: ALS Patient Care From Both Sides: Why get a Feeding Tube?

If you decide to get one, sooner is better, preferably when FVC> 50%.

They do help conserve energy, help one avoid choking, and you don’t have to use it if you don’t want to, or you can use for meds and hydration. They will help you maintain your weight, which slows disease progression.
The downside is pain, mostly just for a few days, and the surgery and anesthesia can be rough if respiratory status is poor.

When you decide, discuss it with your family and put your wishes in your advance directive.
 

This also discusses some studies done...ALS has many variants and there is no right or wrong decision, it is a personal one.
 
I don't remember ever reading here that a CALS forced a feeding tube on their PALS.
I do know a lot of times the PALS refused until they reached a certain point and then said yes.
That certainly happened with my husband - he always said he would have one, but not until he was ready. So he put it off until he was emaciated, dehydrated and in sever danger of aspiration. I respected that while not agreeing with the rationale. He never adapted well to feeds as his digestion and slowed and was unused to much volume. His hydration improved however.

I hope you have a good relationship with your CALS and can trust that your wishes will be followed.
 
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