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 Sleep patterns 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Sleep patterns
For those of you living with your Lewy Love, what are his/her sleep patterns? My husband's are pretty much as follows:

Wide awake at 4:00 or 4:30, breakfast, shower, catheter care, dressed etc. by 6:30 and sound asleep in his chair by 7:00. He will doze off and on for a couple of hours. After lunch, he takes a nap for about an hour in his bed [between 1:00 and 2:00, approximately]. If he misses this nap, his evening agitation is even worse, so this nap is important.

On his feet and wandering around the house after dinner until bedtime. Night meds [including sleeping pills] at 9:15, then to bed.

I guess this schedule works OK for him, but I don't nap [can't] and probably am not getting enough sleep. For one thing, even when he sleeps through the night, I don't!!! I'll wake up almost every hour and think I hear him, even when I don't. Does this happen to any of you?


Fri Feb 12, 2010 12:32 pm
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Yes, very similar with Mom.

I had two story house and Mom was down stairs. I had to baracade the staircase. I slept in a chair next to her. This was when her hallucinations and sleeping were so poor. Talked to the nerologist and he said she was sleep deprived. In a delusional state for around 48 hours at a time. Then she would sleep good for I cant remember how long. Just glad that she slept. The doctor perscribed serequel(I know not good for her) but he said although black boxed he had nothing else. The serequel worked miracles and we could sleep again. I do wonder if the serequel led to her death. Sorry to admit... I was ready too. Once the serequel was increased she went fast! Not sure if was coincidental or not.
Sharon10


Fri Feb 12, 2010 12:44 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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It's a very fine line we tread, isn't it? I had considered asking the doctor for Seroquel, as it seems the drug of choice for most dementia-involved friends I know, although they are mostly AD, not LBD. Since my husband had such a fast downward spiral on Risperdal, I've been afraid to try it. My doctor gave me a Rx for hydroxyzine--for me, not for him--which is a type of antihistamine and does make me drowsy but I'm afraid I'd sleep too soundly and not hear him, so I don't take it. :(


Fri Feb 12, 2010 12:55 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Mom's Sleeping Patterns
My Mom doesn't live with me but I spend so much time at her ALF (including awake, overnight) I can tell you her sleeping patterns. It actually changes every three nights. Most often, she gets up at 4:30 or 5:00 am and gets toileted, dressed, and starts pacing. In about an hour she will be sleepy again and will lie down and sleep until 7:30 or 8:00 am. Then she's up for the day. No naps, although she may lie down and rest for 10 minutes in the afternoon but she doesn't actually sleep. She goes to bed about 8:15 pm after meds and sleeps well for two hours or so, then gets up once an hour to pee until she's up at 4:30 or 5:00 am again. She gets most of her sleep between 8:15 pm and 10:30 pm and 5:00 am to 8:00 am. Mom has never been a napper and she natually has more energy than most people; certainly most people her age (87).

Often we will have a three day pattern. One day of this schedule, then a night when she hardly sleeps at all and follows a caregiver around all night, then a night when she sleeps well between 8:15 pm and 1:30 am, gets up for two hours, then sleeps through till 8:00 am. A snack will often help her get back to sleep during the middle of the night.

People have suggested sleeping pills but since she gets up so often to pee I don't want her to be drowsy from the pill and fall. She won't call a caregiver for help (or can't, I'm not sure). They do a bed check on her every two hours but most often she tells them she doesn't have to use the bathroom. About once every week and a half I'll hire a nighttime caregiver or my husband and I (we take shifts) will stay overnight with her to see if she can still get out of bed on her own, manage the bathroom, and get back in bed. So far so good, although she has peed on the floor twice in the last week.

This may be more than you wanted to know, but the nighttime is a big challenge for us all and I'm glad you brought up the topic.


Fri Feb 12, 2010 1:08 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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My husband has an indwelling urinary catheter, so at least he doesn't have to get up to pee! :D


Fri Feb 12, 2010 1:11 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
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Frank usually has 3-5 all nighters each month, sometime a couple in a row, I keep a journal so I checked and it averages out to 3-5. If he's up I have to get up, I don't know what he'll get into. The rest of the time is very good. He'll go to bed between 7-8:30 and gets up about the same time in the AM, 10-12 hours of sleep. If he's sleeping, I go to Curves at 5:40 AM and get home 6:45, and most of the time he's still sleeping. I try to shower him at night put cream on his feet and then socks so in the morning I just have to pull his jeans and sweatshirt on. He may doze 10-15 mins a few times a day and then he just works on distroying the house. I've been wallpapering the kitchen and he'll trying to help, :x he never helped on his best days. There have been a couple time when I wanted to take a shower but I didn't trust him to stay out of trouble, so I've called one of our girls and they chat with him until I'm done. As it's been said, where there's a will, there's a way.


Fri Feb 12, 2010 1:21 pm
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An article I just read from the Journal of Clinical Psychiatry states the following: "Quetiapine has been shown to reduce psychiatric manifestations of DLB without causing neuroleptic sensitivity or increasing EPS. Hence, quetiapine is an attractive candidate for the treatment of psychoses in DLB and other dementias." Quetiapine is Seroquel.

About Risperidone [Risperdal] it says: "...risperidone has been associated with high risk of neuroleptic malignant syndrome."

The article is Lewy body dementia: the litmus test for neuroleptic sensitivity and extrapyramidal symptoms. by A. Baskys, 2004.


Fri Feb 12, 2010 1:22 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
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Oh, Gerry! That's funny--my husband also wants to help now, when he NEVER did when he was well! Go figure! I let him peel carrots and potatoes recently and it took over an hour, so I was late getting the stew on. Frankly, it drives me nuts. But I try to find non-critical things for him to do. It is weird, though. In the 34 years we've been married he didn't help around the house, even though we both worked full time. NOW, when his fine motor skills are kaput, he wants to pitch in and help! :x --Pat


Fri Feb 12, 2010 1:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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The ALF where my dad is is trying to adjust his sleep patterns. In Dec. he started deciding he needed to go to bed a 6 PM, right after they brought him back from dinner. Apparently that resulted in him being wide awake and wanting to get up in the middle of the night. He also seems to need incredible time in the bathroom between about 2:30 pm and 3:30 pm, when it is shift change time.
So, they now try to keep him up till 8 or 9 pm, he gets up at 7 am, and they put him in bed from 2 - 4 in the afternoon. They leave his tv and light on so if he isn't sleeping at that time, he can watch his tv. Yesterday when I got there he had no idea he was watching a soap opera, something he's never done in his life!
Reminds me of raising babies and small children. Mine never took naps after 18 months! So much for my "down time" back then! Lynn


Fri Feb 12, 2010 2:18 pm
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Joined: Tue Jan 05, 2010 5:27 pm
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My mom, Goes to bed around 9-10, wakes up every 2 hours and goes to the bathroom. Then gets up for the day by 7:30. After breakfast she falls back to sleep in her chair, and then goes back to bed for about 2 hours. Then back and forth from her bed to the living room all day. And she is on seroquel. It does not help her sleep. I am talking back and forth from the neurologist to her doctor trying to get something to help her sleep. WHen she goes to her room during the day she can lay down for 5 mins and get right back up. I have had her checked for a UTI and that was negative. It has been an exhausting week.

Tammy

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Fri Feb 12, 2010 4:39 pm
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My husband takes Temazepam for sleep. He started taking it while in the ALF and we have had him on it ever since. It helps him get to sleep but not stay asleep. I'll be glad when the days are longer when we can take walks outside later in the day. It might help.

Tammy, does your Mom get really restless between dinner and bedtime, like my husband?


Fri Feb 12, 2010 4:50 pm
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she gets restless and delusional after about 12 and on... like she is just gone most the time now. but she is really worse in the late after noon and evening. She gets to the point sometimes she refuses to go to bed. SHe is falling asleep in the chair but when I try to get her up she says she is not asleep and stays put.
She is starting to get this really wild look in her eyes. Does anyone know what this is from?

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Fri Feb 12, 2010 5:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Tammy - my dad often gets a wild look in his eyes and it is always when he is really angry about something. Like when I tell him I cannot take him anywhere in the car because I cannot lift him in or out and he can't help. Or, when he says yes, means no, I respond to the yes, and he's mad at whatever I've done for him. He looks like he's going to explode! Does she seem angry when this is happening? Could it be part of the muscle rigidity thing? Lynn


Fri Feb 12, 2010 10:08 pm
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Joined: Sun Jan 24, 2010 3:27 pm
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Location: Illinois
Post sleep patterns
mom just started two days ago on seroquel.. mom said tonight that she had horrible dreams last night is has anyone had this problem and does it go away? She did have quite good nights for a while and now it is bad dreams at least 1 night so far.. she normaly gets up at 4 am and stays up.. until she sleeps in her chair for a nap around 9 or 10 am.. but these nightmares she isn't going to be able to handle..

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lots of love and prayers
Lynda


Fri Feb 19, 2010 11:28 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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You might check a website such as rxlist.com or drugs.com to see if nightmares are a possible side effect from Seroquel.


Sat Feb 20, 2010 2:27 am
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