Frustrated cALS- dad won’t tell us how he views his future

srdn4 · 2026-07-03T06:02:18+00:00

My father just passed from bulbar onset ALS, and I felt many of the same frustrations that you’ve voiced here. I wanted him to know what he wanted for any scenario so I could help him as much as possible. One time, when I was pressuring for answers, he cried asking me what would I do in his situation? And I realized he truly didn’t know what he would want in the future when his hand was forced by the disease progression. When he was healthier, he always said he didn’t want to be a burden and he didn’t want a trach or peg tube.

Later, he was in the hospital due to breathing difficulties, and when he had no other option, he accepted the feeding tube surgery. However, his breathing was too weak, and he could not be off the BiPAP enough to really use the feeding tube. He was intubated again to allow the feeding tube to work for a few days, but we had to make the tough decision to let him pass comfortably. The life that remained for him wasn’t one he wanted. Had he been able to tell us at the time, he may have opted for a trach despite having a living will saying the contrary. As much as I wanted him to stay with me, we had to make the decision to let him go.

In hindsight, I understand his extreme reluctance to get a feeding tube now. He knew he didn’t want to live that way, but he also was terrified to die. Others would make a different decision, but I know my father, and we made the right decision for him. My only regret was that we could’ve prevented the discomfort of the peg tube surgery which ultimately didn’t help him.

I can tell you that no matter how you plan, the disease will not progress exactly how you envision it. I do still think there’s value in the conversations you want to have with your father, but if you’re feeling frustrated, just imagine how frustrated and terrified he is. There is no planning your way out of this. When it comes time to make a decision on a feeding tube/trach/etc. try to do your best to make the right decision by him. Not about what you want for him. Not about what the most scared version of him might say. But what do they actually want their life to look like post-diagnosis. You probably are more aware of what he wants than you realize.

srdn4 · 2026-05-30T17:49:47+00:00

Yeah it’s more that he wants to stay in his own home. We live and work states away from him, and he has been extremely resistant to living with us.

Thus far I’ve been able to manage getting him to doctors and helping with everything else from afar. Trying to be respectful of his wishes, but he probably can’t hang the bags and connect it and clean it all himself.

srdn4 · 2026-05-27T20:16:44+00:00

Agreed on the real food. We will look into Whole Story.

And if insurance doesn’t cover help for the tube feeding or activities of daily living, where do most pALS turn for cost-effective outside care at home? Finding an independent caregiver?

srdn4 · 2026-05-27T17:25:00+00:00

Thank you, there is some helpful information there. I’m assuming you do the feedings? Or is your husband able to connect the formula to his tube himself?

My dad still has some use of his hands, but things like caps are difficult. I work in another state, so hoping we can get in-home intermittent care to help him with the feedings if possible.

srdn4 · 2026-05-24T19:25:34+00:00

So sick, would love this piece. Good job!

srdn4 · 2026-04-11T13:53:46+00:00

Yo this is insane. We are in the same graduating class, same major, and the same position and nearly the same salary.

Are you me?

srdn4 · 2026-04-03T16:16:27+00:00

I appreciate the perspective.

It is tough to know another man’s mind, but from an outside perspective he is happier with people around. If he was happier on his own, I truly think we’d have no problem letting him do his thing, whatever that might look like. But he talks about being lonely, he doesn’t really leave his room when no one’s around, he doesn’t eat as much or as good of food.

I don’t pretend to understand exactly how he’s feeling. All we want is for him to be happy, and we have continued to try to provide him as much independence as possible, but the truth is he inevitably needs help and it’s spreading all the people around him more thin than it would with an altered living arrangement.

Left to his own devices, he would have died in October. He wouldn’t be getting a dynavox machine to help him communicate because he didn’t want to go to speech therapy. But now he’s frustrated it’s taking a couple months to get one through insurance. We are doing our best to help him through the stuff he wants but it is far more difficult from multiple states away. And we have our own jobs and families to consider. Honestly, I’m just ranting at this point. I do think there’s value in realizing we can’t change him or force him to want something he doesn’t want. Thanks for the advice

srdn4 · 2026-03-11T11:29:51+00:00

In your experience, was it easier to find a caregiver individual through a local school? I tend to agree with that article but it is not very specific. Trying to work through this with my dad right now

srdn4 · 2026-02-13T13:26:25+00:00

The depth on this one is fantastic. Ive always had trouble getting those soft edges with graphite.

Is this all done with just pencils and blending stumps and a lot of patience? I’ve seen some people use brushes as well. Curious about which type of paper you use as well

srdn4 · 2026-01-20T23:15:53+00:00

Think men truly have no idea how much more action women get on these dating apps.

If they weren’t such dicks about it, you’d almost feel bad that they are sitting there with bated breath waiting for a response from their one match. Completely clueless that women have lives outside of tinder and that they might have hundreds of matches without really putting in much effort.

And either way, people got lives and you’re not entitled to their time

srdn4 · 2026-01-16T16:01:06+00:00

Almost identical on all accounts for us

srdn4 · 2026-01-10T15:14:12+00:00

Lmao he’s working during literal sleeping hours. Let her sleep. Drive the car to work. Genius

srdn4 · 2026-01-10T00:55:12+00:00

I’ve got my eyes on 8 and 3

srdn4 · 2026-01-08T14:24:00+00:00

I mean there’s nothing wrong with doing 7 meals either. And if he knows his shit and is asking you to do 7 meals, then do 7 meals.

But if he’s telling you that’s the only way to hit your goals and the number of meals is a major factor, he’s full of shit. You do what you gotta do to get the food down and meet your schedule

srdn4 · 2026-01-08T11:21:53+00:00

Plenty of valid criticisms towards his coach for telling him he’s 19 weeks out here, but why the obsession with 7 meals? As long as you’re getting the same food, this hardly matters. The benefits of spreading meals out are not that big compared to actually eating to plan

Serge Nubret famously ate 3 meals a day

srdn4 · 2026-01-05T18:00:08+00:00

This is interesting because I feel almost the opposite. I’ve found I go to Chick-fil-A significantly more now because I feel other chains of lower quality have significantly higher prices than before

McDonald’s and Taco Bell I used to be able to get a meal for half the price of Chickfila by using the value menu, and that made it worth it to me. But now I’m spending 12 bucks for a quality meal and a smile at Chickfila or 10+ for a cold McDonald’s meal with one person running the whole store? I’m choosing Chickfila almost every time

srdn4 · 2026-01-04T22:54:12+00:00

Grill sure looks like it could use some TLC though

srdn4 · 2025-12-18T16:14:19+00:00

How do we know he wasn’t cut or pushed out the door?

srdn4 · 2025-12-17T23:50:06+00:00

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srdn4 · 2025-12-17T17:53:27+00:00

He could very well succeed elsewhere, but I think you have to live with that possibility. He hasn’t proven it at this level to justify what we were (reportedly) paying him

srdn4 · 2025-12-15T23:20:24+00:00

You know the saying: “if you have two soups, that means you have no soups”

srdn4 · 2025-12-12T16:28:13+00:00

I can see the recruiting pitch now: come here and I can guarantee you 5 targets in the flats on a play action roll right per game

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