u/Grand-Discussion7642

Buckle in for a long one….. I’m so sorry for that.

MIL was diagnosed finally in 2025 after years of her now late husband saying there was a problem. It wasn’t till after he passed that we really noticed the deficits to the point we had to move her in with us in early 2025. We think dad was unknowingly picking up the slack around the house and taking care of things such as finances and house cleaning. Long story short, diagnosis of vascular dementia and Alzheimer’s. No staging. Neurologist says moderate at this time. Left my job to become her full time caregiver, which I’m happy to do. I’m no stranger to cog decline, bedside nursing teaches you a lot. But this isn’t the end of a long work run where you get new patients weekly. Personality changes are no issue for us. Constant reminders to eat, bathe, manage meds, incontinence…. All no big deal for me, just another day and I’m happy to be her constant record player of reminders. She’s almost always pleasant. But the sleep. For. The. LOVE!! THE SLEEPING!!! We were in cycles of constantly wanting to sleep to not sleeping at all for the most part. Now we seem to have skipped the insomnia cycle. We’re sleeping all. The. TIME. Bright side? Only one or 2 middle of the night walkerless house wonderings 🤦‍♀️😬 But keeping her awake for a few hours in the first part of the day is impossible. I was in tears today trying to keep her up. All her providers, and myself, agree we need to maintain somewhat of a “normal” sleep schedule and implement good sleep hygiene habits. This has helped so much compared to her schedule prior. We all know the drive to sleep all day, be up all night with this disease.
Current schedule:
11:30am up for breakfast and meds
Up till 3 then nap
Up at by 6pm for dinner, evening activities
Bed around 11.
She manages most of this schedule with little reminders, but keeping her up from 11:30am to even 1 or 2pm is becoming impossible. I literally went to the bathroom (2min TOPS!), came out and she was in bed….. asleep!

Walked out to get the mail, bam, in bed asleep.

I’m out of the room for a minute, off in bed asleep again.

I lost my patience after the 3rd time. She can barely walk without the walker but will practically run to bed as soon as there’s no one left in the room. Or try to sleep on the couch, which we are trying to limit per the dr for proper sleep scheduling/hygiene. I ask her if she knows what time she’s supposed to stay awake till, and she puppets back “3pm”. Ask what time it is and she says I don’t know. Reminder notes don’t work. As she walks off to bed and you say “mom, we’re not napping now, it’s time to stay awake” and you get “ok” or baby talk “ohh man, I wanna nap doh” and just says “sorry”. Once she’s up by 6pm post nap she’s fine usually, though will sometimes try to go to bed at 7:30-8pm. She won’t do anything physical, refuses to do her pt/ot exercises, doesn’t want to even go outside and sit on the porch. Can’t make it 30ft without needing to be wheeled to her destination when out of the house. So I don’t think it’s exertion. Meds have been looked at, though it happened before we added trazadone and Norco, we tried stopping 100mg trazadone in pm but then she doesn’t sleep AT ALL at night, which exacerbates the daytime sleepiness. One pm Norco for knee pain, tried stopping that but her discomfort understandably keeps her up all night. Tried giving these meds earlier in the evening, no change. I’m so tired of her being tired. This is so excessive that I have to sit in the room with her at all times. Even then, if I turn my back to fold a couple pieces of laundry, she quickly snuggles into the couch and tries to sleep 🤷‍♀️
I’m so ready to just let her sleep whenever she wants, but then I’ll be sleep deprived and have a whole different set of problems to deal with 🥴
I hate this disease.
I hate that it’s stolen her abilities.
I hate feeling hopeless.
I hate that it is never ending.
I hate the word “sorry” now.
I hate how we have been made into the sleep police. I just hate this.

Thanks for letting me rant….

Yes provider is aware. New imaging scheduled. Neuro recheck scheduled.

Since there seem to be a lot of us that took the risk of using Nuva because of their deals, I figured I’d share mine. I see a lot of posts show people are getting their orders, so I’m hopeful I get mine… eventually. I really want to like this telehealth. I know, I know!! It’s a new company! But my order total was less than the Pom BPI sale so I risked it….🤷‍♀️

Order: 3mo of advanced tirz w/B6 dosing, uploaded.

Ordered 7/4- approved on website, sent to doc for finalization, preauthorization placed on payment card.

7/7 Delay 1: denied because they said I had history of type 1 diabetes. Nope, neither type 1 or type 2, overall healthy.

7/8 Phone call to fix, scrip approved.

7/8 Delay 2: B12 switched to B6 per request at intake.

7/10 notified request for vit B change sent for doc approval.

7/14 no response to message from 7/13 asking about delay. Called Nuva, was told they would escalate to doc. Also told there may be a payment issue since pre authorization expired. No way to get ahead of this, just "watch and see if it happens".

7/15 notified that doc approved B6.

7/16 Delay 3 @ noon-notified that billing can't happen (see 7/14 note) and told they were sending a new link for payment. Checked for link in portal, texts, & email- nothing. Waited 4hrs, still nothing.

7/16 4:45 called Nuva about payment link…... THEY FORGOT TO ATTACH IT!! New link sent while on phone, order paid.

Now we wait to see if it even goes to pharmacy without another call. And god knows if it’ll ever ship 🙄

Husband ordered and used wrong privacy card, it was a 1 time use card (it’s new to us, we’re learning, sorry!!). The initial authorization ticked the “one use” 🤦‍♀️. Again, we’re learning. Too many cards have been skimmed this year so we were trying to be safe. He messaged his care team and it’s been read, but we’d really like to get this taken care of since we leave town next weekend and would like to not have an order show up while we’re gone. Cherry, can you help u/Cherry_Pomegranate ?

Those of us who just received our refills last week through BPI, can we still take advantage of this deal?

Hoping to give some good news to everyone whose Pom page still says “ERx Linked to Order” or is stuck on “processing”. Paid for 2 orders (hubs and self) on 6/17. Reached out to Cherry since my Pom page never changed yesterday 6/24. Both orders are with shippers today 6/25 (BPI-UPS, Hallandale- FedEx). My Pom acct says filled, hubs does not. With Friday being a holiday that makes both orders filled in 5 business days, well within the 7-10 business days quoted. Even if they don’t show up until Saturday that is still well within their stated range. Hopefully this helps with a lot of the nervousness going on. While I wish everything was Amazon next day delivery, I had to remind myself to be patient lol.

For those who haven’t had issues, maybe share your timeline to help settle everyone’s nerves too.