When to suction?

[cassboyette74]

So, I’ve never posted to a forum before but, I’m hoping it will help me to better care for my PALS. This disease has so many symptoms and I’m trying to find some answers. It seems like just taking a pill will definitely not help. My PALS is very resistant to change. He is having a hard time accepting the machines and treatments necessary. Anyway, I need to have an idea of when I should start using the suction machine for him? He just leans over a trash can and spits right now. But he does it a lot! He has scopolamine patches and that helped some. I don’t want him to aspírate though. How can I tell if he’s getting all of the saliva out and not in distress?

 

[lgelb]

Welcome, Cass, and sorry that you find yourself here. We will help you however we can. It is definitely a moving target to keep up with, and it is even harder for PALS to adapt to dependence on machines and other people.

If he is not coughing, choking, or changing color and feels he got the bulk of the saliva out, he probably did. Not everyone needs or tolerates a suction machine, so I would not press it now if he's not in distress. Does he have a feeding tube and/or BiPAP? Feel free to introduce yourself with more of his/your story.

Best,
Laurie

 

[KateEmerson]

Welcome! I found this group to be very helpful and knowledgeable when I was taking care of my husband and I hope you feel free to come back with any questions you may have. Kate

 

[affected]

So sorry to welcome you here, but we will support in every way we can.

You will get your cues as to when/if to suction from your PALS. Many PALS refuse many of the machines and options. None of this is easy, but the more you ask, the more you tell us, and the more we get to know you, the more we can help out.

 

[cassboyette74]

Thanks for the welcome everyone and the advice is appreciated. Things are progressing very rapidly. My PALS has almost completely lost his ability to suck up anything. He is choking and coughing a lot! Up until about 10 days ago, he could walk. Now he can’t stand. He has using a Bi-Pap at night, now if I take it off for any length of time, his oxygen level goes to the high 70-80. So, I’m not sure how long he can last like this. And everything is declining so rapidly. Is this normal in ALS? I’m wondering is it days or weeks? I need to prepare myself, but I’m feeling overwhelmed.

 

[affected]

I hear you - my husband was rapid progression and I was just running to keep up! He was gone only 11 months after diagnosis.
What about a feeding tube - it sounds like he doesn't have one? This would take away the choking when swallowing for him.
It really is overwhelming when so much is deteriorating at the pointy end. Unfortunately pretty much anything is normal with ALS from beyond-belief-rapid to snail-pace.
We can't tell if he has days or weeks I'm so sorry. This disease is so unpredictable and there are so many things that can affect it all. A pneumonia from aspiration or serious injury from a fall are definite things to now try and avoid as they will of course speed things up more.
We learn to take each day at a time somehow, and find a place of realising we can't save them but we can be with them and love them.

 

[lgelb]

It sounds like he needs the BiPAP full time, as many PALS end up. With a nasal mask that is comfortable (I always recommending trying the Circadiance nylon options), that should not be a problem for whatever eating, drinking, coughing or talking he can still do. Is he pursuing a feeding tube?

To go from walking normally to being unable to stand in 10 days would be pretty fast, but I am not sure if that's what you mean.