Nearing the end?

[Brianof4]

My wife was diagnosed in March of 2020, since then it's been a quick and steady progression of loss of function. She was unable to use legs by September, arms by November and went on a Bipap full time in late March. It's gone by so quick trying to figure out how to adapt to so many situations and balance taking care of our 4 small boys. Somehow even through the year seems to be gone quickly, each night stretches into forever as I switch between cough machine/suction/mask until 5 in the morning.

She hasn't eaten more than a couple hundred calories per day of liquid diet since late April. She claims that it's not because she's having trouble swallowing, but denial has been in the mix since this started. It's always been something else besides ALS and various snake-oil naturopaths have been all too quick to confirm that (for a nice hefty fee of course, and some supplements that they are all to happy to sell). PEG was never an option, because that would have been admitting what was wrong. Now it's too late for that.

I wonder if perhaps this is the best course for her, as apposed to losing her lung function. She is unable to tolerate any painkillers, every one of them that hospice has tried has made her violently ill. Starving might be a much better fate than going further without a way to suppress the air hunger.

Has anyone seen someone go down this path? Most of what I've read has to do with losing the ability to breathe, not this. I'm wondering what to expect. She's already lost so much weight I'm not sure how much longer her body can keep functioning.

 

[affected]

Sorry to welcome you here Brian.
It is really hard to advocate for our PALS but they make their choices and you are doing the hardest thing there is to just support her.
Are you saying her breathing is not affected yet? If she is taking in a few hundred calories per day and breathing is fine, she could linger for months.
I'm sorry you are doing it this way. Most PALS do progress until breathing is the problem, but progression takes out different areas of the body in different orders for each person.

 

[Brianof4]

Her breathing is affected, if she is off of the bipap for longer than a few seconds she starts panicking. She can't make any sounds off of it, just mouth words. I think this is what started the lack of eating, she was unable to tolerate being off of it long enough to chew.

On it however the respiratory therapist says she has good function. I'm not sure how long that will last though. It seems like once the disease targets one of her areas, it just tanks immediately.

 

[lgelb]

I'm sorry to hear about your wife's progression and denial, Brian. That is a hard path.

I'm not understanding, why does she need to be off the BiPAP to chew, presuming she has a nasal mask at least for those times?

Best,
Laurie

 

[ReginaS]

My PALS had relatively fast progression. He died 16 months after diagnosis. Breathing was least affected and he could be without bipap for a long time. He used it in the end though - some. He also did not have a feeding tube. What happened was that most likely not getting enough calories sped up the progression and eventually he could not swallow any longer. Nothing. Hospice recommended morphine and Ativan. I don't think I would want to do this without. Not sure if your wife is also not tolerating these... and what else is available. He died of ALS but also of lack of water and food.... It took longer than Hospice expected. If it is too late for a tube that's possibly what will happen. There are these little sponges on sticks that we used to moisten his mouth, small ice chips. I think it gave him some comfort but it sure was very hard to watch and for him it was very hard as well. I was very relieved when that kind of suffering was over for him.

 

[lgg]

Brian, My PALS progression, while slower than your wife’s was quite similar. Over the past 3 and a half years it started in arms, then legs, then lungs. He too refused a feeding tube. He’s on his bi-pap almost 24/7. He gets his nourishment by drinking 3-4 high calorie Ensures a day and a chocolate milk shake a few times a week for more than a year. Nights are often difficult for various reasons, comfort, itching, mask needs adjustments, coughing, etc. His oxygen levels and heart and intellect are going strong. All I can say is I feel your pain and frustration. Not being able to see into the future is difficult, to say the least. Hang in there and remember you are not alone. Leslie

 

[Frances word]

Hi Brian ,
We are in late stage als here . My husband had severe breathing anxiety until they put him on Ativan . It really helped but they are all different .

 

[turbo72]

My husband is getting much weaker in his legs, arms are also. He can't walk, talk or eat . He's on a feeding tube. He sits in a lift chair most of the day, drooling is constant most times. I don't know what part of his body will go next. I wait on him 24 hrs. a day and will do what ever I can to be sure he is comfortable. What can I expect next?? Jane

 

[Brianof4]

My wife passed a few weeks ago. Ultimately, due to starvation from being unable to swallow food. It ended up being relatively unremarkable, close to the end she would sleep more and more until one day she didn't wake up. Her heart stopped the next day.

She was so scared of reaching the point that her lungs couldn't exchange even with the bipap, I hope this was more peaceful for her.

 

[Nikki J]

Please express your condolences here Brian’s wife