View unanswered posts | View active topics It is currently Mon Oct 20, 2014 7:21 am



Reply to topic  [ 15 posts ] 
 Getting up lots at night 
Author Message

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Getting up lots at night
This isn't quite the same as "mixing up night and day" I see in another posting. A few times so far (more to come??) my husband has gotten some idea in his head that makes him think he has an appointment he has to be up in time for the next morning. Then he gets up 3 or more times during the night because he can't see what time it is or he has to go to the bathroom or both. Last night was a doozy, with him rummaging around for his glasses and knocking things off shelves, brushing his teeth at 4 am -great sleep for me, to say nothing for him! I got him a little kids' clock a while back that has a big lit dial and will speak the time if you push a button, but he either ignores it or can't find it (tho I keep it in the bed with him) or can't understand the voice. Is this just a new bad part of the illness, or has anybody found any solutions for such behavior? Makes me awfully crabby the next day but of course he doesn't really understand why.


Sun Aug 19, 2012 4:55 pm
Profile

Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Getting up lots at night
Kathy....I know, I know. Yes, probably every 3rd or 4th night we have the ups and downs. Either he is late for an appointment, or just the other night (and this was the first accusitory event) he wanted to know if I had emptied the joint account and he was going to call the banker....I told him it was 3 a.m. and he said he would do it in the morning.....he forgot. I think these events are less frequent now that he has started on Seroquel. He was taking it at night just go get sleep, but now the Dr. has me start giving him a half pill at 11 and at 3, then two at night, because his "sundowning" has started to begin about noon .....it is a journey, and it is getting weary for both of us. Carol

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Sun Aug 19, 2012 5:40 pm
Profile

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: Getting up lots at night
Thanks, but he's been on Seroquel for ages - maybe it's time to up the dose. Does anybody use an actual sleeping pill if it looks like it will be a bad night, or is that bad on their hypersensitive systems? I've tried to think whether there was something in particular that leads up to these events, and it seems like something he's obsessing on (like a "project" in building, one thing he used to do for a living) and then worries he won't get up in time. Anybody out there have other solutions to the not-being-able-to-read-the-clock problem? Or maybe that wouldn't help.


Sun Aug 19, 2012 6:37 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Getting up lots at night
I think night time can be could be even worse time for them and if they think they have an appointment they are trying so hard to hang onto whatever they have left. What worked for us is we found a a very large number digital alarm clock that was set in plain view and often when my husband woke thinking he had something he might miss I could point out the time to him without having to get up to do so and many times he just relaxed and went back to sleep ! I also learned not to tell him about appoint,ments ahead of time it just made life a bit easier for me !

_________________
Irene Selak


Sun Aug 19, 2012 6:43 pm
Profile WWW

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: Getting up lots at night
I sleep in a separate room - he's a loud sleeper AND gets the bed wet - so I have a bed alarm for him. I wake up if he gets up. Necessary but disruptive. Might look for a larger-digit clock-where did you get yours? But OMG! figured out what caused problems LAST night - he never got his pills at dinner because he didn't eat dinner, had a late lunch. Not gonna let THAT happen again!


Sun Aug 19, 2012 9:50 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Getting up lots at night
Kathy - there was a lot of discussion on here about 2 yr. ago, having been a part of that discussion! My dad had several clocks AND watches, and calendars, and post-it notes with various time-related things written on them, all over his walls. At some point our LOs just simply lose their grip with how to tell time, how to know night from day, how long 5 min. or 6 hr. is, etc. Whether it's winter or summer, raining or the sun is out, it's all messed up. Time becomes completely random and all mixed up. So, I don't know that buying any particular kind of clock is going to fix anything for you. You'll probably just have to deal with situations as they arise.
If you want to read the old discussions you might do a search on "clocks" and see if you can find postings that would be informative and helpful for you. I wish you the best in this very challenging role, with this heartbreaking disease, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Aug 20, 2012 7:55 pm
Profile

Joined: Thu Jul 19, 2012 3:37 pm
Posts: 8
Post Re: Getting up lots at night
I agree with LTCVT. Everything is messed up. My mom was up ALL night talking to her "friend". I dozed a bit, but everytime I woke she was talking. I had to put a "seat belt" on her as she sleeps in her recliner chair. She hasn't slept in her bed but one night in the seven weeks I've been here. I don't have wandering issues anymore and she doesn't seem to mind. The restraint is not tight at all, but she doesn't get how to put her arms under and scoot out. I don't know how anyone works full time in this situation. My mom is on Xanax and one at night USUALLY helps her sleep. But the only thing I can say about this disease is that every day is different. God bless each and everyone of you.


Tue Aug 21, 2012 3:05 pm
Profile

Joined: Thu Jul 19, 2012 3:37 pm
Posts: 8
Post Re: Getting up lots at night
Oh yeah....and she doesn't nap. EVER.


Tue Aug 21, 2012 3:06 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Getting up lots at night
We bought the large Digital clock in I believe Walgreens.

_________________
Irene Selak


Tue Aug 21, 2012 8:18 pm
Profile WWW

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Getting up lots at night
Like Irene, we stopped telling my dad ahead of time about appts. and such because it just made him upset because he'd always think he missed something even when a appt. was days, weeks or months away. It wasn't worth his aggravation or anyone else's to let him know beforehand.
His room looked like a clock, watch and calendar shop, and despite all those things he had absolutely no ability to understand time in his last year. He could have just returned from breakfast, think it was night time, and that he'd missed breakfast, lunch and dinner that day, even with all these time-telling devices right in front of him, on his wrist, etc.
He also went through 3 electric razors during that time because "none of them worked." After a while we'd just pretend we'd bought him a new one so we weren't blowing through $75 every few weeks!
This is pretty common behavior from what I've seen with others who have LOs with LBD and related dementias. All the best in dealing with these daily issues, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 21, 2012 8:26 pm
Profile

Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Getting up lots at night
Yes, my husband does the same thing. If he knows we have an appointment, and sometimes even when we don't, he will get up at all hours of the night. Since we have a split memory foam bed, I don't feel him get up, but when he turns on the light, I wake up. He may be brushing his teeth or starting to get dressed. I ask what he's doing and he usually responds, "getting ready." We have a clock with large red digital numbers on it right next to his side of the bed for just this reason and he doesn't look at it. When he learns it's the middle of the night and we don't have to leave until noon, or whatever the case may be, he comes back to bed. Then he'll do it all again a couple hours later. I try not to tell him what we have going, but a calendar on the fridge carries four weeks worth of appointments. He needs the calendar to keep his days straight. I usually don't talk about appointments we have coming up and, unless he makes a point to look at the calendar, he won't know about them until the day before. Funny, but he asks every evening, "what do we have going on tomorrow?" Gratefully, it's easy for me to go back to sleep so this behavior has been manageable for us, just frustrating. For one who has a hard time getting back to sleep, it's physically draining. Don't have any advice or suggestions, just thought you might like to hear you aren't alone in this.

God Bless,
Terri

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Tue Aug 21, 2012 8:27 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Getting up lots at night
This is very common behavior and I would think it has to do with the fact they feel like they are always forgetting something, it has to be so hard in their minds it really is so sad !

_________________
Irene Selak


Wed Aug 22, 2012 8:49 pm
Profile WWW

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: Getting up lots at night
I just ordered him a new, large-number atomic clock, will see if he can tell time on that any better.


Thu Aug 23, 2012 12:07 am
Profile

Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: Getting up lots at night
Kathy and all.....we have a very large numbered digital clock, which Norris can easily read and see day and night. The issue for him is that cognitively he doesn't realize that 2:00a.m. (which he can see on the clock), and darkness means that it isn't time to get up for a 10:00 a.m. appointment, which we don't have but he thinks we do. So having a clock doesn't deter him from getting up and down. Usually, and I hate to admit it, but I get rather "testy" after the 2nd or 3rd time getting up, and strongly say "you WILL lay down, and you WILL sleep, and you WILL not talk until it gets light. He will agree, and then usually goes back to sleep. Oh the challenges we face. Carol

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Thu Aug 23, 2012 10:14 am
Profile

Joined: Sun Apr 04, 2010 6:54 pm
Posts: 64
Location: Portland, OR
Post Re: Getting up lots at night
Oh, I totally agree -when Ben got up every hour or two the other night, I got pretty ticked by the 4th time. But that was my fault for forgetting his evening meds. Last night when he got up once at 4:30, he complained when I was putting him back to bed that he hadn't eaten dinner yet. But I just figure a bigger clock may be one less hassle for me. We'll see!


Thu Aug 23, 2012 1:12 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 15 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr