New Caregiver

[Jdeanda]

He needs a G tube asap, talking him into one is another hurdle. Since he has been recently dx w/pancreatic cancer I'm sure that is also another factor for his weight loss and lack of fighting. They went to his house today to demonstrate a bipap machine and they were there for hours that my dad said he was done. He says hes not doing it. We have a trip to Lake Charles next month for him and i thought that would give him something to look forward to but i think he is just feeling everything is a Band-Aid and doesn't want to allow himself to be happy. We just dont know what to do.

 

[affected]

At the end of the day, all these things are his decision and many PALS choose no NIV and no G tube.
All you can do is give him the information and then advocate for the choices he wishes to make.

I don't believe as a CALS we can have any idea what this is like for our PALS, no matter how much time we spend with them or how much we do for, or with them. This is not something that you can fight and win.

It may be worth simply making the most of what time you have with him, letting him know you will advocate for him and acknowledge that the only control he has is to make these kinds of decisions.

My husband made many decisions I did not personally agree with, but I advocated for these things for him (he couldn't speak).
Would he have lived longer if I had made decisions for him, or insisted on talking him into decisions I wanted? Maybe, but then we can't say that for sure, it's not that simple.
Would my husband have enjoyed any extra time had I done that? I'm certain he would not have, as he would have felt he had no control and resented me doing that.

Be careful deciding things like 'he doesn't want to allow himself to be happy'. ALS is the worst thing I could imagine dealing with, and he is really newly diagnosed too.

Just love him and support him. Maybe he will decide differently, but maybe he will won't and all that will go far better if he knows his loved ones support whatever he chooses. I believe it will make the entire experience easier for your heart, and your family.

 

[lgelb]

Second that.

If opposing the tube and/or BiPAP is lack of knowledge or familiarity, that can be addressed with the facts, not advocacy. But if he understands what is involved and the consequences and says no anyway, and means it, that is the path you will need to travel with him. I would just have the conversation(s) that if he is rejecting life-extending interventions, then it really is time to ask his doctor about writing an order for hospice, or supporting the end of life outside the hospice framework. Either is an option, but you want to start that discussion and express your willingness to follow his lead.

Not sure how BiPAP setup/training would "take hours," or what his negative response was based on -- do you have more insight on that?

 

[Jdeanda]

I am happy to say that my dad went thru with getting a PEG tube, and he has finally felt full!! It has changed his whole demeanor! Now the bipap machine is another monster we have to figure out. He just says he doesnt like the way he feels emotionally with it on. I know he will get to the point where he doesnt have a choice but for now baby steps/ we will get trained with the cough assist this week because hes almost choked twice. its was heart breaking!

 

[affected]

That is such awesome news!
With the bipap - see if he will try just 10 minutes at a time when relaxing with a tv show or movie he enjoys.
Try doing that twice a day, and increase to 15 minutes next week.
He will get used to it, but it can take time, and some people find one mask is better than another, so encourage him to try different masks if he is resistant.
The best thing will be for him to sleep with it on, but he won't find that easy until having it on for that 10 or 15 minutes becomes comfortable.

It's a lot of adjustment for everyone, it sounds like you are going to be a great team.

 

[Jdeanda]

Thank you! i didnt realize there are different masks. We will definitely look into that . His voice is getting really bad and im so nervous about the progression. I hold his hand and i feel it twitching all the time. We are super nervous about whether he knows that he will end up in a wheelchair and become paralyzed. After the tube he said its a matter of time before hes better. My dad does not do any research at all or even accesses the computer at home. He doesnt want to be around for any conversations, but he has to know right? I wish there was some kind of guide to this horrible inhumane disease!

 

[affected]

Different people deal with this differently. A lot of PALS also suffer from reduced cognition. It is possible he could be very scared and find the information overwhelming and try to hide in a degree of denial.
The decisions can all be hard ones as it isn't like you can make decisions that will cure him, but you can help improve his quality of life significantly. However, if he doesn't want to take those measures you may have to accept and advocate for things you don't completely agree with.
We would all get that guide in a flash if only it existed, I couldn't agree more!