My dad is against PEG

[AlexM]

Hi!
My Dad cannot drink any more, the doctors suggest PEG. He absolutely does not want it. What do we do? He wants to eat, he needs water. he is dehydrated already.
So far we support him with salt-infusion through IV.

AlexM

 

[K-Town]

I think you're dad is the one who ultimately has to be the decision maker in this. He does understand what a peg is is how it will help him feel stronger. I find that it scares PALS to learn they need a 'tube' but there is nothing to fear. He needs a peg explained to him in a way that doesn't sound painful, or scary, both emotional and physical. On the otherside, he may not want a peg for 'personal' reasons. So long as he is able to make his own health decisions, and that the information is delivered properly, then he will be able to come to a conclusion that suits his desires.
A Peg is really not a big deal. Most PALS are against the idea at first. Once they understand the benefits, it usually tips the scale.
It a tough one. We know. I'll be there too soon enough. I am a CALS.
Hang in there. Don't give up.
Just my thoughts.

 

[BarryG]

Alex, I too was against the peg when it was first mentioned to me but since I got one I cant imagine being without it. I lost way too much weight before I got my tube. I am able to get nutrition and stay hydrated and I am even having a beer through my tube right now. As far as drinking through my mouth I have discovered that if I bend right over I can still drink water out of the tap and I have installed taps with tall spouts to give me room. I can no longer drink out of a bottle or glass but the tap works for me. I just bend over and slurp the water out of the stream as it is going into the sink. I know it wouldn't work for PALS who are not able to stand but if your dad can then he might want to give that a try. Please let him know that all of us who have a peg tube think that it is the only way to go.

Barry

 

[AlexM]

Thank you so much!

You cannot imagine what your words mean for us, my Mom and me. It is a relief to learn that somebody has been already been where you are afraid to go! I have translated your words for my mom (my parents are in Russia) - we feel much less lonely and confused. I like Barry's comment about beer - it will be a good argument for my Dad to consider.

Thanks again.

 

[DgtofTNfan]

Alex add my Dad to the column of PALS who did not want a PEG but was so glad he changed his mind. He was losing weight fast until he got his PEG and now his weight has stabilized. He has more energy during the day and does not struggle to get in the nutrition that he needs.

I can't find the thread but Barry discussed that he was asked by his ALS clinic what they could do differently to create a better awareness of the PEG and its effectiveness. There were some good discussions about pros of the PEG in there. Barry?

Dana

 

[BarryG]

Dana, the thread that you are referring to is Thelma's "PEG Tube a Raging Success- so far.." from April. I just bumped it up so it is easy to find in the ALS/MND Caregiver Support Group Forum.

 

[DgtofTNfan]

Excellent Barry - Thanks for your help!

 

[dldred]

Alex,
When I mentioned the PEG to my mom she said she didn't want to do it either. The more information she read and heard, she changed her mind. She does not need it yet, but is not afraid of getting it now that she knows how easy it can be. Please try to convince your Dad to reconsider, it ultimately is his decision, but he should be well informed before deciding something like this. The people who have had it done can give you the most information, I am sure any questions he has can be answered by someone here.

Dana

 

[AlexM]

Thank you very much, everybody!

With your help we seem to have convinced my Dad and calmed down my Mom about PEG.
Guys, I appreciate your courage, sympathy, and unselfishness!

Alexandra

 

[thelma313]

Alexandra, that is great news! I am very happy to hear that your Dad is reconsidering. My father was also opposed to the PEG tube and eventually reconsidered when I explained exactly how non-invasive it is. It has been 4 months since he got it and he gained 13 pounds. It has helped him more than anything else he has every tried.

 

[AlexM]

I hope PEG will help my father too. He is in hospital now, they are deciding - he is very weak....

 

[thelma313]

Alexandra, I hope it works out for your Dad... keep us posted. I'm thinking of you.

 

[laurel]

I am saying prayers for your Dad. Let us know how he is doing please Alexandra.
Laurel

 

[Gelthling]

Mumsaid on Thursday at the Speech Pathologist that she did not want the peg. My brother was with her and made her write down if she understood what not having the peg meant. Tonight, I got a text about how she couldn't drink a thinckened tea through a straw so i told her to drink the thickened drink normally - she tld me she is too upset to try and does not want to drink anything again. I am waiting to let them know at the MND clinic on Tuesday all the issues we are having with mum as she seems to keep getting gastric on and off for the past three-four weeks, and now if she is not going to drink anything... She was dehydrated last week when our case manager went round. What happens if someone does refuse the peg - how long does it take to get the better of them? Also, has anyone had to get guardianship over an MND person because of cognitive issues and they were just refusing all carers help etc? I have been told by my case manager I need to get guardianship over mum.

One stressed out daughter.

 

[pamnandy]

Gelthling, I'm so sorry to hear about the problems you are facing with your mum. The stress you're feeling just jumps off the page at me. Is there a possibility that she would allow at least an i.v. for fluids to rehydrate her? I'm sorry I just don't know how one goes about getting guardianship and would assume the procedure would vary between countries. Is there a friend who can help you do some footwork (i.e. getting the right contact for you to call) to begin the process? Remember to reach out for help. You don't have to carry it alone. I found, much to my delight, that most people are very happy to help in any small way. I will pray for especially you today. Remember, we are all here for you.

Pam