Thought I’d write here some, it helps me to get some thoughts out.
Being an ancillary CALS, watching the decline and being active in helping with accommodations, the worst part is to see his attitude decline so. My Father-in-law being the PALS in this case; let me caveat it that my wife (as am I) is an only-child so while he is not my dad, we are a close family and have been married nearly 20 years (holy cr@p!) so I cant help but do all I can for him. My own dad is 80 now and in oddly remarkable health generally. Anyway, for FIL the experience has been so gradual, so slow, that even now that he is no longer able to walk, it just seems like it has been a gradual progression. It all started in 2020, looking back, just very slowly. Not until 2021 was an EMG done before some foot surgery, which did in fact indicate he was consistent with anterior horn cell disease; none of us bought it at the time, his lumbar MRI also showed nerve compression and neurologist said “go ahead get the surgery.” A dx was finally made in June 2022, and he walked until March of this year. But its been down down since then. His voice is weaker, he pauses to breathe more, and says he feels it. He still eats and swallows etc, fine. He has just lost interest in doing anything, trying to do much of anything. He was never a reader or game player, so why would he start now. There isn’t much to fill a day’s time. And he doesn’t have a lot of friends calling him up much. They live 10 miles away and we visit weekly. I’m able to help fix up things he needs, like this week I welded up and bolted on a handle for his hospital bed, modified so he could get a better grip at a certain spot to move around.
He has no interest in a feeding tube or a breathing machine, and I totally understand that. He stopped the Rilutek because, honestly, its clinically shown to “extend life” and he has a good point that “why would I want to extend this condition?!” I told him that gradually it will just be more difficult for him to expel CO2 and he will at some point become unconscious from that. We all seem to be able to live with that. Whats amazing is how many doctor visits a ‘healthy’ senior citizen needs to go to, and in his condition…..he really never needs to go anywhere anymore. The doctor at the VA was telling him he needs to be eating more and taking this and that. We have this saying “re arranging the deck chairs on the Titanic.” My mother in law said “oh what if he catches a cold or something” and I said…maybe it will turn into pneumonia. Pneumonia has been called “the old man’s friend” I told her. She thought and said, “youre right, actually!”
I am wondering if he will just gradually stop breathing before he loses arm and swallowing function. Because he just seems to be “fading out” more than “progressing” at this point. But he’s got a good comfortable room on the first floor, a home care aid for 12 hours per day (some are better than others), and a supportive family.
I know everyone here has different goals, different progression, and different enjoyment of their lives. In fact some of what I’ve read here is very heart warming; people in poor circumstances who find a reason to want to keep enjoying what life can offer. FIL is not one of these folks, sadly. And I just have to accept that for what it is. Life is contingent, as they say, and most of the human condition is learning to adjust our minds to our circumstances as they change.
Anyway sorry to waste a lot of characters here but it helps to have somewhere to put some thoughts down….
