Doesn't want to get the Feeding Tube.

[Chase_Corin]

I am thinking the prognosis is grim but my dad seems to have been going back and forth about getting a PEG.

At the ALS clinic back in January they said they would scedual the surgery for the PEG soon. Dad is very nervous about getting it because last time he had surgery he was placed in a medically induced coma for 3 months, almost died twice and practically bit his tougne in half while coming out of the anestasia.

So I compleetly uinderstand. Dad wouldn't let mom call dad's doctor about getting it sooner, and life went on.

When we went to the ALS clinic May 15th they said he should have it within the next couple weeks... well it's going on 4 weeks and no call from the doctor. Once again dad dosn't want mom calling the clinic and pushing the issue.

The problem is that dad isn't eating very much at all. He will not let mom puree his food so he is still trying to chew everything and things get stuck he chokes and loses interest in eating, or things get cold and after re-heating them several times he gives up. (We don't mind reheating things for him)

Last week I warned him about dehydration after getting some wonderful advice from some people here because he found his mouth getting sticky and gross. However he won't let us raise the glass to his lips for him to drink or use a straw. He has to do it for himself and his arms get tired and he stops drinking too. I noticed his mouth is sticky again tonight.

Mom and I keep suggesting solutions that might make things easier but he rejects them almost without allowing us to finnish speaking.

I am thinking he is telling us in his own way that he is ready to die. But then again he won't tell us his wishes so that we can get them written down and inform his doctor or lawyer of them.

Another medical issue came up this week too. Dad years and years ago had Phlebitis in his leg, the doctor recently changed his medication and now dad's leg is acheing. He dosn't want to go the the hospital because they ask too many questions and he has a hard time communicateing with them because the nurses have no patience. I don't know, is he wishing for a blood clot?

I am afraid if dad puts off getting the feeding tube much longer it is going to be too late, that his resperatory function will be so bad that they won't risk it.

Are there others out there that have refused the feeding tube?

How have you gotten by?

 

[Miss]

My husband had grave doubts about the PEG. Until I read him a description of death be starvation or dehydration. We scheduled the surgery, went on vacation, and he had it when we got back.

 

[panguinjen]

My husband fought the tube until one lunch when he could get NOTHING down and realized that without the tube he'd never see his granddaughter grow. He had the tube two weeks later. His breathing was compromised and his ALS doctor and UCSF used his BiPap for a bit of anesthesia and a local at the site of the tube placement. He had no nausea and very little discomfort. Your dad has lost all kinds of control and is hanging on to what he can. Missy is right, death by starvation or dehydration is no way to die. Your mom needs to call the doctor and get a social worker, respiratory therapist, nutritionist involved to help her. She is not calling against your dad's wishes, she's calling to get help for herself and you. PM me if you need more specifics.

Thinking of you all,
Jen

 

[HelenL]

From what I understand, he also has a big risk of aspirating some of his choked food into his lungs, and then developing pneumonia...

If you're aware of the issues he had the last time he had surgery, you can make sure the nurses and docs know about it to prevent it from happening again.

I don't know how old your Dad is, but he's trying to control everything around him; I don't blame him, I understand it; but if he wants to be comfortable, then he needs to make some decisions, or he will end up dying sooner, and harder.

Does he have any FTD? That may also account for some of his "stubbornness"...

Good luck, and keep us posted.

 

[notme]

If he has a history of clots and has pain in his calf--it should be checked. The test for a clot in the leg is a blood test called a d-dimer (I believe) and an ultrasound on the leg--all in all--pretty easy and painless testing for clots.

I'm sorry--wish I could offer more.

 

[Butterfield]

I can understand your dads struggle with loss of control. I have struggled with the same decision but have found the Palliative Care staff at Darthmouth- Hitchcock helpful in thinking through this issue.

My thinking is that I prefer and early out, want some control, but want to be comfortable and die as peacefully as possible. With the feeding tube I could still decide to stop nutrition intake. Probably get it done.

 

[DeansWife]

Like Jen said about her hubby, mine also refused the tube for quite a long while. I would bring the subject up and he was give me a definate NO! Then one night he was having so much trouble eating pureed food, choking on every bite. Worse than most times. The next day he wrote me a note that said "after much thought and prayer, I want to get the tube". Happiest day for me in a long time. You can't force anyone to get it but be encouraging. I hope he does decide to get it. Good thoughts for you and your family. Hugs. Janice

 

[notme]

You might want to let him know that anesthetic (knock out drugs) aren't always needed--sometimes can be done with a local. Also let him know he can still eat even with it as long as he's able to.

It will make meds easier to keep him comfortable as well. Lots of positives. I don't wake up from anesthetic well--my heart stopped last time, so I can understand his fear--but there are ways--and different meds. They would check his past history and use different meds to lessen the chance of the same reaction, too, I'd think.