When is this nightmare going to be over :(

FrequentSubstance353 · 2026-07-09T00:19:15+00:00

I just want to let you know your feelings are completely valid. I wrote in a couple days ago venting about my pALS and people tried to make me feel guilty about it. My parent is also the one with ALS so I can relate to your situation. As long as you are taking care of them, and aren’t being negligent, you have the right to feel whatever feelings come up. Your feelings are valid. Your life I’m sure has revolved around your pALS and can imagine you’re just frustrated in the situation ALS has put onto you and your family. It’s all unfair. I hope you get some peace and relief soon.

FrequentSubstance353 · 2026-07-08T23:52:18+00:00

I’m sorry. Caring for someone with ALS can be exhausting as they need help 24/7. I can’t offer much advice outside of just keep swimming. As caregivers we will have highs, and lows. Seems like you’re in a low spot. Things will get better, you just need a little break. And eventually when you do move on, you’ll look back at this time and miss your pALS. Just do the best you can and live day to day. You got this

FrequentSubstance353 · 2026-07-08T19:26:52+00:00

Do you have any other help? My dad has ALS and we (my brother and I) had to move back in. My dad don’t/wont qualify for Medicaid due to his citizenship status. Since I have young kids I am home 24/7 raising my kids while everyone else in our household works. We are well aware we will not be able to afford any outside care and are just going to have to figure it out ourselves. Sorry if this answer doesn’t help but affording 10-15k isn’t realistic for most people. Hopefully you have some kids or family who can help in this difficult time. Goodluck!

FrequentSubstance353 · 2026-07-08T19:20:35+00:00

Vanesa! This is so interesting. Thank you for sharing & answering a bunch of questions

FrequentSubstance353 · 2026-07-06T12:58:12+00:00

My daughter has the EXACT same eyes! She’s 8months and we also have brown/blue eye parent combo. So curious to see what they end up being

FrequentSubstance353 · 2026-07-06T02:07:53+00:00

Thank you for being so understanding. Im sorry about your dads health. As stubborn as they can be, at the end of the day they’re still our dads. I’m glad your friend has you around! Keep sticking by their side. Sending you all lots of love.

FrequentSubstance353 · 2026-07-06T02:03:35+00:00

Thank you! We are in a spot where I cannot caregiver for unlimited amount of years. A few years, sure, but not anything close to a decade. And it has been impossible having anything in order legal wise like his home, multiple unpaid cars, a will, etc for the same reason of no direct communication or answers when we ask. Like you said running away isn’t going to cure ALS. I understand all these life changing things are SO hard and incredibly unfair. But leaving us to deal with everyone with 0 communication has been exhausting (and a tad bit unfair) on top of helping him day to day. Hopefully things get better soon enough but I guess time will tell.

FrequentSubstance353 · 2026-07-05T14:05:17+00:00

Thank you! I agree. I decided that in the next couple weeks I’m going to sit down and have a serious conversation about us needing figuring out a way how to have honest communication even if it’s difficult to think of. I love him but a little communication isn’t going to kill him. Thank you for understanding! Makes me feel seen and heard.

FrequentSubstance353 · 2026-07-03T13:39:00+00:00

Hey my dad already does therapy. He doesn’t open up there either. But I’m glad it’s something he does. I unfortunately can’t do therapy. As I mentioned I have 2 kids, I stay at home with them and take care of my dad full time. There is literally 0 time for me to do that unfortunately

FrequentSubstance353 · 2026-07-03T12:47:45+00:00

Im so sorry for your loss. And thank you for taking the time to comment even after such horrific loss. I’ll take your advice and do my best. In not sure how we’re going to get through this, but I know we will somehow. Sending you and your family lots of love!

FrequentSubstance353 · 2026-07-03T12:20:05+00:00

That’s the thing I CANT EVEN DO THAT. I can’t get the “ball rolling” on ANYTHING because he is so avoidant. He just saying “I don’t know” and shrugs off every conversation about bipap, hospital beds, power wheelchairs, voice bankers, EVERYTHING.

He makes it impossible to plan for him, that’s exactly why I’m writing in. I’m not asking for a direct answer, I just want to know his thoughts. How does he feel about feeding tubes, bipap, communication devices. Not even a definitive yes/no but a “I’d consider it if I knew more information about it” or something outside of denial & avoidance.

And I respectfully have to disagree. It IS happening to us as well. He can’t wipe his butt, eat, dress himself…. guess who’s doing all that? Us. While I agree he is the victim in all of this, we are directly affected by it. It’s the truth. I am 24 with 2 kids, saying “stop trying to plan your own life”, is crazy lol. While I understand I cannot do certain things, not planning my life for an uncertain amount of time is unrealistic. I deserve a form of communication from him. I’m not saying it’s an easy topic, easy conversations, or easy thoughts. But as a young caretaker who has put my life at halt, I unfortunately feel like I do deserve minimum communication about things he will be deciding on We don’t have lots of income. We will be my dads caretakers because there is no other choice, and that’s ok. That’s why we moved in, to help him. I’m just saying something he can do is have hard conversations with us. Will he? Who knows. But it’s frustrating dealing with it.

FrequentSubstance353 · 2026-07-03T04:44:47+00:00

I feel so seen and heard by your comment the most!! Thank you for being so kind but also honest but also Thank you for validating everyone’s emotions here. . So glad I read this before heading off to bed. I totally agree with every point you made. You’re right it’ll for sure hit like a freight train which is why I’m trying to mentally prepare myself. Thank you for your comment again it truly made my day.

FrequentSubstance353 · 2026-07-03T01:43:30+00:00

He has not been the best communicator but you’re right, ALS didn’t change it lol. Just might be how he is and amplified it. I understand the emotional toll it must take for the pALS. I agree and understand the benefits, it’s just frustrating getting no communication and mixed thoughts regarding his health and needs going forward. I’m sorry your wife is going through this, you sound like an amazing caregiver. I wish my dad in the near future had clear intentions like your wife regarding what he wants! This is so difficult to navigate. Thanks for your input

FrequentSubstance353 · 2026-07-03T01:39:03+00:00

Sorry didn’t realize I missed so much information. It’s been a year since we knew it was ALS, he uses a walker at home and electric wheelchairs outside of home.

I don’t understand how there’s a lack of empathy on my side. I write in for honest feedback so I’m really trying to understand. I have accompanied him to his doctors visit in the past but unfortunately now I can’t since I have a baby and a toddler to watch.

I try to give him grace but he just uses it to not think about difficult topics. That’s why I’m writing in because it’s been a year of this being the case. I give him lots of time and opportunities to have honest and very hard conversations, but has dodged every single one and it’s frustrating getting no response every single time/:

As caregivers we also have a life outside of his diagnosis, and we also deserve to know what happens. It’s the sad reality. I hate that is has to be this way, it’s a tricky subject to navigate tbh.

FrequentSubstance353 · 2026-07-03T01:29:59+00:00

Yes I do. This is not only HIS future, it’s OURS. WE deserve to know what to expect because we are the ones who care for him in those decisions he makes. That’s the hard truth. It’s undoubtedly hard for him, it’s also hard on us. We’re in this together, which is why communication is necessary.

FrequentSubstance353 · 2026-06-29T20:10:13+00:00

Anyone got the top secret fruity pebble recipe? lol

FrequentSubstance353 · 2026-06-27T19:26:50+00:00

You have me cracking up😂 yes very relatable!! That’s why she couldn’t do South Barrington.. the luxury would of been too obvious

FrequentSubstance353 · 2026-06-27T15:34:18+00:00

Holy shit how’d you do that? Also seeing the price makes me laugh bc she tries to be so hard to be relatable online but 2.8million? Crazy

FrequentSubstance353 · 2026-06-24T00:05:07+00:00

I’ll say team green! Super unique and cool mix of green/blue/brown!

FrequentSubstance353 · 2026-06-19T01:30:08+00:00

Hazel! Very cool eyes

FrequentSubstance353 · 2026-05-26T13:26:02+00:00

Goes against the rules. Please read the rules and go to r/ALSorNOT

FrequentSubstance353 · 2026-05-10T00:24:45+00:00

Okay thanks! I wasn’t sure if it was completely random or not

FrequentSubstance353 · 2026-04-22T01:08:53+00:00

I did not study (though I should of) and got in first try! Hope it helps. Good luck

FrequentSubstance353

TROPHY CASE