Breathing decline and discussion of vent …

[kljack16]

My pALS was diagnosed August 31, 2020. In October 2020, he was at 95%. December 2020, 88%. February 2021, 79%. In May 2021, his PFT was 64%. Last week, he was at 47%.

All that to say, this is progressing so so fast. He doesn’t feel like he’s short of breath, but he did a sleep study after the 64% reading. They now have him sleeping with an AVAPS.

Last night, he said he believes he only has months left (given his breathing decline), but he doesn’t want a vent. He says it’s primarily because he doesn’t want to put anymore on me and he doesn’t want to keep spending money (he said “wasting”).

I’m torn as to how to respond to this. I would spend every penny we have to keep him as long as I can, and I will do anything and everything he needs, if that means I can keep him with me. BUT - I don’t want to force him to live with this awful disease if he truly doesn’t want to. How do I know what he needs to hear? He would literally do anything for me; so if I say, “You have to do anything and everything,” he would, but is that beyond selfish of me?

I know everyone on this forum is going through some version of this … what do you do?

 

[Nikki J]

It is a tough issue. I don’t plan to vent. I don’t want to but of course I am not there yet. I think you said you know OJ Brigance? Maybe talk to him and Chandra. He has lived on a vent a long time. Of course they have resources most of us do not but still what life is like on a vent and the care it needs

 

[lgelb]

His PFTs may level out. Anyway, those numbers are not the full story; techniques differ, someone has good days, supine is not the same as upright or tilted in a wheelchair, and the "maximum effort" tests don't reflect real-life breathing, which often gets shallower as an adaptation.

PALS not uncommonly live for a year or more on 24/7 BiPAP, and he is only using it nights as yet. And most BiPAPs are not on optimal settings.

I'm not sure "what he needs to hear" is the question. I would frame it as what you need to hear and what he needs to say, and this is a good time to listen and understand why he is saying what he is saying, how he frames his choices, and what additional information (e.g. what a vent entails, how things play out when you opt out) will benefit both of you.

Best,
Laurie

 

[kljack16]

Can I just say how amazing y’all are and how much I appreciate all the support, guidance and knowledge? Your comments and direction are spot on and so helpful. Thank you both!

 

[Diane H]

The decision to go to a ventilator with a trach has to include consideration of more than just the respiratory numbers. How fast is his overall weakness/paralysis spreading and is he in pain because of it? That is a huge factor! Is he adaptable enough to find enjoyable things to do as he loses strength? Is he able to mentally tolerate his condition or has anger or depression taken over? Is he willing to at least try the medications and equipment suggested to him? Does he understand that a ventilator doesn't require being homebound much less being confined to bed? Is he aware that if the cost of a ventilator and supplies is a hardship, it can be reduced or eliminated by applying for financial assistance from the provider? Is he aware that being on a ventilator doesn't medically or legally require any care hours from licensed nurses if family and friends are available and willing to help? That home care doesn't require all the expensive sterile supplies used in the hospital? That opting for a ventilator and trach is a reversible decision whenever the person decides it is not enough to make continued life desirable and that removing the vent and dying is done with medications to make death peaceful?
It comes down to being his decision but it should be a decision based on good information, not assumptions about living with a ventilator.
Diane H.

The Vent Decision; information to make an informed decision.

The information needed to make an informed decision on whether a tracheostomy and ventilator is an option for you.

www.alsfrombothsides.org

 

[lgg]

Last October it was recommended my PALS get a trach and ventilator. He said no. By this time he had no movement in his arms and legs. He also rejected a feeding tube for the same reason: he didn’t want to be kept alive by artificial means. He wanted nature to take its course. As hard as it was, I told him I would support him no matter what. And I did. He started getting his care through hospice (comfort care) in October. They were wonderful and extremely helpful. Around April he needed to use his Trilogy more frequently. At that time his lung capacity was 16%. It wasn’t until this past June when he needed to use the trilogy almost all the time. A few weeks later he could not be without it for even 30 seconds. He decided his time was up. With the help of hospice he had a comfortable and pain free passing on June 21. I am comforted knowing I stood by him and his decisions. We were also very lucky that he never lost any speech or swallowing abilities. I miss him terribly. I wish you and your PALS well. Leslie

 

[affected]

One of things I love about this forum is that you can ask a question and be presented with many facets of the big picture answer. Nothing about this disease is simple, no decision is pure right or wrong, but we can combine experiences and help each person feel right about the decisions they feel comfortable with. I don't have an answer here as my husband was rapid progression with FTD, and I am in Australia the options here are quite different. I just wanted to thank everyone for being willing to give their experiences.

 

[Jimi]

I have been using a bipap 24/7 for over 2.5 years. It's comfortable once you get the right masks and adjust to it. I never intended to get a trach. Turns out my instincts to survive are stronger than I expected. I will be getting a trach and feeding tube in the coming months. As long as you can safely eat, you can use the bipap 24/7 and still have time. All the best, Jim.