brightgardener8 said:Hey everyone!
Back in this depressing little corner of the internet after a quick vacation.
I have a question for you all. Does anyone know a nurse in Washington, D.C. who would be interested in some side work, or maybe a retired one? Here’s the deal: my mom stopped taking her Dexamethasone about ten days ago because she was on a break before starting Temodal monotherapy. Now, the headaches are back, so naturally, they put her right back on the Dex—4 mg. She has to get injections every single day, which is a nightmare since we all work full-time. When I asked her oncologist about a home health nurse, he told me she wasn't eligible. So, I was thinking it would be a huge help if a nurse could just swing by every morning to administer the injection. Even that idea Angela Wright mentioned about learning to do the injections ourselves isn't an option; we live on the complete opposite side of town, and by the time I drive there and back, I might as well have just driven her to the clinic.
Go to the hospital and have her oncologist write a recommendation for the Dex injections. Basically, while she's on chemo, she's treated as an outpatient in the day ward, so she’s entitled to free ampules that a home health nurse can administer (hopefully you've managed to get one assigned to come daily). Besides, 4 mg isn't a massive dose, so she could actually take it orally. That would be eight 0.5 mg tablets a day. Just split them into two doses—one before breakfast and one before dinner. The only real pain in the neck is having to constantly run back to the primary care doctor for new refills, since they can only write up three prescriptions for three boxes at a time.
Also, this whole thing about dropping the Dex while on Temodal is nonsense; my old lady was actually taking as much as 24 mg a day alongside the Temodal for a while. It honestly irritates me how these doctors don't even seem to know what they're doing themselves, and then they turn around and experiment on patients. The hospital doctor keeps trying to tell us that Dex isn't a big deal and can be adjusted as needed, but then her primary care doctor last night was totally skeptical (just like my cousin, who is also a GP), acting like a 16 mg dose could actually kill her. I mean, she might be right, but let's look at this from a palliative perspective... at least it'll stop the head pain and she won't die in agony. Her days are numbered regardless.🙂
We ended up buying those ampules at a private pharmacy because they aren't covered by insurance since they are strictly meant for hospital use. Honestly, I think my mom belongs in intensive care given her condition, but the fact that the hospital has no room for her is a whole other level of messed up. Her primary doctor was over last night and said she'd request a home health nurse to give these Dex injections we bought.
Lilac told me about a friend of hers—a doctor—who actually put a port in her own mother so she could give her meds intravenously when things were getting really bad. We just have to figure out a way to make it work, whatever it takes.
To be honest, it hurts me that this isn't exactly "by the book," but is it any more legal to leave these severe cases to fend for themselves and their families? Is it legal to lie about how Temodal isn't used for recurrences? I won't even start on the mountain of bullshit we've dealt with over the last two years...
Everything really just comes down to the goodwill of the home health nurses and the primary care doctors, who are, by the way, stuck in a terrible position and constantly being harassed by Medicare. Total bastards.😠