When to let sleep, confused keeping schedule.

CatsWithHandsAreTrouble

I've been wondering about this for some time and have tried to look it up but I'm getting conflicting answers and even more confused. Is there any hard or fast rules on how much sleep a PWD should get or if we should force them awake to keep on a schedule?

I see others share that their LOs sleep more as the disease progresses. However I'm confused of that's just a natural occurrence or is it's a result of medication the person takes to help them sleep. I tried asking mom's doctor about how much sleep she should be getting as someone with dementia and she said "six to eight hours of sleep" which is what neurotypical people should get.

I guess it depends on the stage of the disease and any other comorbidities that person has that determine sleep. I'm just getting anxious over it because I'm letting mom sleep as long as she wants and wake up naturally but I'm not sure if that's good or not for a schedule. So many people say being on a schedule is beneficial for PWD and I'm not sure if we really should be getting her up sooner.

She is in a bad mood all day if we try and get her up before she's ready and it's harder to care for her in that state. She also seems to have less instances of sundowning or at least more mild events if she sleeps longer.

Mom sleeps for anywhere from 10 to 13 hours, most common being 11. She's somewhere in the beginning of late stages and ping-pongs around there. I just don't know what to do with her and it's stressing me out.

LaurenB

I don’t have an answer, but I am looking forward to finding other peoples responses. I try to keep my mom on a schedule and have noticed that she will sleep and wake up and then go right back to sleep. I believe this is when she is confused and can’t find her surroundings that she just stops and goes back to sleep. I also know when she does wake up and come out into the living room she will sit down on the sofa where my stepdad is watching TV and will fall asleep again. I believe that this is because her brain isn’t being stimulated and it doesn’t know what else to do other than go to sleep. If I engage her in conversation or eating breakfast or getting dressed, or doing something stimulating, she will be up and delightful for six hours. I then can tell when she’s had enough and needs a nap. For my mom, it really is like having a toddler around and you can see her behavior change when she needs a nap or “reset”.

Kay82

I have been with my mother since last April.  I was still working at the time and she was usually up between 6 & 6:15am as was I b/c I was leaving for work by 7am. May 24th she came home from the hospital after a week's stay for a kidney infection.  I left my job at that time to be w/her 24/7. At her post discharge appointment her doctor advised this would be best for her as she should no longer be alone.  

I have always let her sleep until she was ready to get up.  The time does vary anywhere from 6-8am. She goes to bed anywhere from 8-9pm. We don't have a fixed schedule, as for meals she eats when she gets up & lunch is about 12 & our evening meal is by 5pm. 

She does nap frequently as she is sitting in her rocking chair and I am careful about being quiet yet sometimes when I do drop something she doesn't wake up or will open her eyes briefly.  I let her dictate her schedule. I have woken her once for lunch.

My mother is 89 y/o and I feel she should do what her body tells her it needs. I am not sure what stage she is at, maybe bouncing between 4, 5 and 6. She walks w/a walker, dresses herself and is independent w/her toileting. She is becoming weaker as time goes by.

dayn2nite2

You do what makes your life easier with her, and letting her sleep sounds like that's the best solution.  You can pay attention to what you need to while she's sleeping and then she's in a better mood as she wakes up.

Almost universally, PWD get their nights/days all mixed up so you may find being on the person's schedule less exhausting for you ultimately.

CanyonGal

When my mother was in the early stages of dementia, she would retire to bed between 7-8 pm. She was up for coffee around 6:30 -7 am. So, the 11 hours of sleep was the norm.

At moderate stage, when her circadian rhythm was off, and we had sundowning (triggered sometimes because of not enough sleep), she would sleep most of the morning. She would be going to bed at 7 pm but not sleeping, waking up an hour or so later, and then she would start sundowning - with evidence with the phone bill that she was calling people late at night or when she could use the computer, emailing people. When she was able, she would walk around the facility in the early morning hours.

Memory Care tries to get her up by 8 am for breakfast and dressed for the day, but I have walked into to see her at 11 am and she is snoozing way in bed, which tells me she was woken up but refused to get up and went back to sleep. (She was likely up during the night for a long period of time.) As long as she is up by lunch and has those 2 meals during the day I haven't said much, except I don't like the long periods of time when she is not using the restroom.

zauberflote

Cats, it sounds like your mom is trying to tell you the answer to your question the best way she can-- she is more comfortable being awake when she has slept until she wakes naturally. If you've ever been woken at the wrong place in your sleep cycle, you may know how you feel crabby from the git go after that. 

But I am not an expert on anything but my own sleep. My mother kept to her usual early rise/early to bed/sleep soundly schedule until maybe the last 6 months-- amazing in a person over 90! It was a true blessing for her. 

Edit: meant to say, your polydactyl avatar there gave me a dream recently, in which one of my past cats had NINE toes one one rear paw!

CatsWithHandsAreTrouble

Thank you everyone for your replies, it really helped me to calm down on it. I was confused on how much "give and take" was required and it seems the consensus is to just let them sleep and get up when they're ready. I have absolutely no problem with that.

LaurenB: sometimes I can tell when she doesn't sleep well and want to give her a nap but mostly she just closes her eyes for a minute and then is up again. Sometimes she'd be engaged with something but then still nod off, haha. It's perplexing some days for sure.

Kay82: it must be tough watching her get weaker day in and day out. Mom was an early to bed, early to rise in her previous life too. Lately it's been just early to bed and maybe early to rise, sometimes she doesn't get up until around 10. We adjust her breakfast/lunch times to accommodate her but dinner stays the same time mostly as we can't really make it any sooner.

Thank you dayn2nite2. I've always thought things would go better if she had her own way 100% of the time. We all still work so we can't always let her run the show as we've no night time aide/anyone else to accommodate her if she's up at night. The best we can do now is letting her get up when she's ready and helping her get to bed when she's showing signs that it's time for sleep.

Thanks CanyonGal. I'm pretty much of the same opinion of her getting at least two meals then she can sleep for however long she wants and can have snacks in between. I just get a nagging voice in my head telling me I'm not doing it right. I appreciate the breakdown of your mom at different stages.

Zauberflote! I get weird dementia dreams of my mom sometimes, like she suddenly decided to rearrange their room...while only wearing a shirt. Dreams are peculiar, aren't they? I do my best to listen and watch mom for the nonverbal ways she communicates to us. Thank you for the reminder that she's already been telling me and that I need to trust her more.