Troubles sleeping

herbalgoat

My mom hasn't been sleeping properly ever since her surgery near the end of December. The first few days of the first week of her recovery I understood. She was taking meds that made her drowsy at times so naturally her sleep patterns are going to get screwy.

However, she stopped those meds 3 days in. She leveled out the last two days of that first week and actually slept through the night, minus a bathroom trip or two.

But now she's back to barely sleeping at night and my dad and I just don't know what to do. Some days, especially when we don't have anything to physically do, she naps on and off. We try to keep her awake and engaged, but it's become a losing battle. Yet some of her worst nights of little to no sleep come from when she did stay awake most of the day.

She's also started worrying about things that make no sense, or worrying about family members that are unfortunately no longer with us. And only ever worrying about them right before going to bed at night, never during the day.

Then to make matters even more complicated, during these late hours, often around 2-4 AM, she'll get up and get dressed thinking that we're going somewhere. The only place to go is back to sleep, but now she's getting aggressive with us when we try to coax her back to bed/sleep. And while we try to keep calm and gentle, we're also tired, so that's not always an easy thing to do.

I plan on talking to her PCP and Neurologist about options, but those appointments aren't until late February and early March respectively. And OTC sleep aides aren't an option since I have no clue how they'd react with all of her meds.

We just don't know what to do anymore. Any advice in the meantime would be greatly appreciated.

M1

Sleep fragmentation is very much a part of the disease. seroquel (initially 25 and now 50 mg) worked wonders for my partner for this, i would call her docs now and see if they are willing to prescribe something now so that you can report on it at your February visit.

harshedbuzz

@herbalgoat

If she's an established patient with them, it would be appropriate to reach out now via patient portal or phone call. They may be willing to prescribe something now with a plan to discuss how it's working at the upcoming appointments.

That said, the experience of anesthesia, surgery, and/or hospitalization often comes with a noted progression of the disease to the next stage. This change is sometimes temporary, but often this becomes the new baseline. That may be what you are seeing.

A dear friend's mom had this "getting ready for the day" behavior in the middle of the night in stage 5/6. Mom would wake up to use the bathroom and rather than slip back into bed would get ready for the day insisting the rest of the household do so as well. What helped them was putting motion detector mats next to the bed that alerted friend's phone. Friend would race to mom's bedroom, turn off the lights, and redirect mom to bed when she left her bathroom. This generally worked. Her PCP also started mom on a SSRI with a noted sleepiness side effect which helped too.

My friend's younger son had a year off between college and grad school free-lancing and was living at home while her husband was traveling 3 weeks out of the month. When it was mom and son at home, they'd split Oma-duty. My friend would go to bed around 8pm; her son the night-owl would hand off the phone around 3-4am.

HB

towhee

Being overly tired can sometimes lead to restlessness and make it hard to fall asleep, so letting her nap a little might be a good thing. Reaching out to her PCP about her sleep and lack of appetite is a good idea. How is her hydration? Also, did they give you nurse home health visits as part of your discharge plan? If not ask your PCP to order it.