So so tired

Jeanne C.

Hi fellow caregivers. I don't expect anyone to have a solution. I just needed to say to someone who understands: I'm so %$#% tired. I mean truly weary. My husband's sleep pattern has changed so he basically sleeps for a couple of hours and then is in constant motion for a couple of hours. I just purchased a baby gate because he keeps going up and down the stairs to my loft/office. Dozens of times up. Dozens down. It's only a matter of time before he falls. And due to some snafu/security breach in UnitedHealthcare's payment system, the home aides haven't been getting paid and I haven't had even an hour of coverage in the past week.

He has an appointment with his NP tomorrow and hopefully we can figure out how to fix the sleep thing. What I wouldn't do for a straight 5-6 hours.

M1

Yes this payment snafu is a big big deal--an intermediary was hacked and has caused havoc.

I hope they are able to figure something out. We started Seroquel 25 mg at bedtime for sleep fragmentation and it worked like a charm--kept her asleep all night. She continues to take just a nighttime dose (now 50 mg).

jsps139_

My DH had his checkup today and the Dr prescribed Seroquel because he gets up during the night very frustrated and takes all the bedding off and remakes the bed - this takes over an hour with him confused … I’m too hot … no … I’m cold. It is tiring because I can’t fall back asleep after these episodes. Hoping the Seroquel makes a difference. Hope you find a med that helps - we need our sleep!

Jgirl57

Here’s wishing you and hubby some zzzzzzzz’s

CStrope

I found that my DH is like a 2 year old when it comes to sleep. If I get him to rest, even for just 30 minutes during the afternoon, he sleeps better at night. When he doesn't rest he's so overtired and would up he can't calm down enough to go to sleep, and stay asleep. One night he basically stayed up 90% of the night, only taking little 10 minute cat naps when he almost gave in to the exhaustion. It was a very very long night.

I found that the Seroquel does help him sleep, but it puts him into a extreme state of confusion, and caused him to urinate in a huge variety of locations throughout the house. Now I give him Seroquel at lunch time, it helps him relax in the afternoon, and he is relaxed enough to go to bed and sleep good at night.

JeriLynn66

Thinking of you this morning @Jeanne C. ❤️

Jeanne C.

Thanks, all. I think from pure exhaustion I slept through my husband's up and down last night. I managed to string together a solid 6 hours and he didn't do any damage so we're all good. I plan to talk to the NP about meds (I know she submitted a request for consult to the geripsych in the practice).

@M1 yes, the cyberattack on Change has been a huge mess from hospital systems on down to tiny home health agencies- I feel the worst for the small players who have been impacted- some have no way to make payroll (except somewhat predatory loans) and their already underpaid staff live paycheck to paycheck.

GothicGremlin

My personal feelings about those who launch ransomware attacks on healthcare -- when they catch them, jail them and throw away the keys. There's a question about UnitedHealthCare group's HIPAA compliance.

I hope you're able to get some rest, @Jeanne C.

FTDCaregiver1

Dear sleepless in Seattle, My DW also has trouble getting to sleep and staying asleep. Like you, I got the gate. I'm up late tonight as I got a full 8 hours of sleep yesterday, woot! Tonight, not so fortunate, its 12:30 am as I write this and I just got her to sleep just now, after repeated trips to her bed, sitting until she sleeps and returning only to find her up with the lights on talking loudly, moving chairs and such.....so I feel your pain. Suggest you might want to consult you attending medical expert for medication at bedtime (I have a couple i employ now) and perhaps employing regular bedtime routine both of which have helped DW get rest, as well as I. This disease is pretty dynamic, so what works now may not work in a month or two, so staying connected with a good medical expert you choose who can help assess and prescribe medication is important. But nights like tonight still occur, I'm just trying to make them less frequent, good luck.

Jeanne C.

Hello again friends. He's sleeping but I'm not tonight. It's too soon to tell if the medication change is working but he's slept well the past two nights. His NP suggested that it's time for a hospice evaluation. Deep breath.