Posts by mistyranger4

Diana dear, please don't beat yourself up with those questions... there really wasn't any other way things could have gone. He’s just like all our loved ones who have passed—he's in a much better place now, free from all the pain and suffering. As for us, I guess we just have to take it one day at a time... until the day we're finally reunited again!

Angela Wright, I am sending you my most sincere condolences!
Hang in there... stay strong!

Hey everyone!
First off, I just wanted to say a huge thank you to all of you. The advice you’ve shared has truly made life so much easier for both me and my husband. Sadly, he passed away on October 17th. I can't thank you all enough once again, and I'm praying that God gives you all plenty of strength, and that your loved ones facing illness find as little pain as possible.

Hey everyone. Even though my husband isn't fighting cancer, I still find myself stumbling upon so much advice that helps navigate his illness. He’s actually battling ALS—a brutal neuromuscular disease—and unfortunately, things have been taking a turn for the worse lately. To make matters more complicated, it’s just the two of us, and since he’s become completely immobile, leaving him alone to go to work is getting harder and harder every day. So, I wanted to reach out and ask for some advice. Does anyone know how much leave you can actually take to care for a family member? I was browsing the Medicare website and found this:
The right to wage compensation during sick leave for caring for an insured person—a spouse living in the same household—lasts for a maximum of 15 working days for each established illness.
After that, I gave Medicare a call to see about extending my leave, but I didn't get a straight answer. They just wouldn't tell me if, after those initial 15 days, I'd be eligible for more leave next month or even further down the road. They just kept repeating that I could use those 15 days while the illness lasts, without ever clarifying what happens next. Has anyone here dealt with this before? I mean... I've just used those first few days for the first time, and I'm trying to figure out the timeframe for when I can use them again. I'll try to stretch things out by using some vacation time and maybe some unpaid leave... but what comes after that? Please, if anyone has been in a similar spot, help me out and let me know what my rights are!

Angela Wright, hang in there... you really are such a huge source of comfort and strength for all of us. I honestly wish I knew how I could ever pay you back, or even just how to comfort you enough to take away some of that pain and disappointment. Just stay strong!

My husband is battling ALS, and he’s starting to struggle with his breathing, so I’m really out here looking for some solid advice or recommendations. We’re based right around the Washington, D.C. area!
Thanks so much to everyone for the suggestions!

mistyranger4 said:Does anyone happen to have a recommendation for a solid pulmonologist?
Thanks in advance!

Seriously, does absolutely nobody have a recommendation for a lung specialist?

Well, I guess you could always try reaching out to the local Department of Social Services, if nothing else. At least they might be able to point you in the right direction or give you some idea of what the next steps should actually look like!

Does anyone happen to have a recommendation for a solid pulmonologist?
Thanks in advance!

slyseal28 - My mom used to make my dad freshly squeezed beet juice after his treatments—just straight from the source, you know? But they were super strict about one thing: she wasn't allowed to use any metal at all when preparing it, so no metal pots or utensils or anything like that. It actually seemed to help him quite a bit, because his blood work started looking normal again really fast. Thanks for sharing that link!

Amy Hayes28 said:Did someone here mention some kind of bioenergetic healer from (I think) Indianapolis???
I can't seem to find the post anymore, but I'm pretty sure I read about her here!
If anyone has her number or contact info, could you please PM me? 🙏
Thanks

Actually, could I get that healer's number too?
Thanks in advance!

Ivanica, stay strong... hang in there!

Hang in there, Ivanica, we're all rooting for you!
Stay strong...

Angela Wright said:When you're dealing with an illness, it becomes this constant backdrop to everyday life—not just for the patient, but for the whole family too. I think the hardest part is definitely that initial shock. Eventually, you just... adapt. You settle into a new normal and accept things because, well, there isn't really any other choice, and maybe that’s just how we humans are wired. Personally, I try to make the most of whatever free time I can find by getting some fresh air, taking the dog for a walk, catching a movie, or grabbing coffee. But honestly? Some days I don't have the energy for all that. Sometimes, just lying on the couch at home and watching a movie while holding my loved one close is more than enough. Talking to others here who are going through the exact same thing is also a huge lifeline for me. If I can offer even a little bit of advice or comfort to someone else, it brings me such a sense of peace and truly fulfills me.
One major realization that hits people who are sick, or those deeply tied to someone who is, is realizing just how little you actually need to be happy. It’s those tiny, cheerful little things you used to overlook that suddenly mean everything. I don't think anyone comes out of a situation like this without that profound shift in perspective.
Do I ever feel like I've just had it? Like, totally fed up with everything? Yeah, honestly, it happens several times a day. You want to live, you have all this enthusiasm for things like your career or your hobbies, but suddenly everything feels like it's on indefinite hold. Luckily, those heavy moments usually pass pretty quickly (it's kind of like that feeling when your alarm goes off early for work and you just can't face the day—you're exhausted, you're dragging, and you just don't want to move, but you eventually get up because you have to. Except here, it's love that pulls you up). And I never, ever let my mom see that side of me. I think it would absolutely break her heart.

Angela Wright is spot on; she captured exactly what I’ve been feeling! I’ve just accepted that this is how it has to be, and I've reorganized my entire present and future around caring for my husband. It's just the reality now, and you just have to weather the storms and keep moving forward!

A family member of mine isn't dealing with a tumor, but rather a case of rapidly progressing muscular dystrophy. Since they’ve always been such an incredibly open, bubbly, and outgoing person (well, they used to be), this sudden loss of autonomy is hitting them hard. It’s making them increasingly irritable, angry, and just generally short with everyone around them. I’m doing everything humanly possible to support them and ease the burden, trying to make things as painless as possible, but man, it’s tough. It’s especially draining when I’m the one catching the brunt of those angry outbursts every single day—it doesn't happen constantly, but it's definitely becoming more frequent. I’m starting to think we might actually need some professional psychological help to navigate all of this properly, but I’m honestly at a loss... where do you even start looking? And who should we actually reach out to?

Hey everyone!

I’m facing a pretty huge challenge right now and could really use some perspective. My husband is quite ill—he’s dealing with muscular dystrophy—so he has very limited mobility and spends most of his time at home. I’m out working all day, and we live just outside of NYC.
Up until now, a family friend has been stepping in to help with his care, basically being there to assist him with whatever he needs throughout the day. But she’s actually moving abroad, so we won't be able to rely on her anymore. To be honest, I have absolutely no idea how to go about finding a professional caregiver, so any insight or advice you might have would mean the world to me. I did try posting an ad on Craigslist, but I haven't had much luck getting any real bites (probably because we’re a bit further out from the city center). Based on what you've seen, what are the typical rates for home care? Are there specific red flags I should watch out for? Honestly, any stories you can share—whether they were good experiences or total nightmares—would be incredibly helpful.
Thanks so much in advance!