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 Excessive sleeping 
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Excessive sleeping
I recently read in a book on Lewy Body Dementia that sleeping 15 hours a day is quite normal for a Lewy Body patient. It added that when it gets to about 20 hours a day it probably is closer to the end. My husband is sleeping about 15 to 16 hours a day. He says he feels better after his "naps" and does seem to do better after a rest. Does anyone have any words of wisdom about the sleeping part of Lewy Body Dementia. I do understand that the medication he is on also contributes to the sleeping. Overall he is doing better on the Seroquel, Sinemet and Exelon Patch but has little energy and is quite lethargic. He still has his sense of humor and overall is not showing signs of depression. Often times if it were not for the sleeping, lethargy, and massive medication he is taking, I would question his diagnosis....but I know that is the nature of the beast of Lewy Body. Thanks for listening.

Susieg


Sun Oct 21, 2012 7:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Excessive sleeping
My husband is on the same medications and probably sleeps at least 16 hrs/day, partly in his w/c. I wouldn't be too concerned about it.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Oct 21, 2012 8:10 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Excessive sleeping
Thanks for reassuring me. It's helpful to know we are not alone in many ways or any ways.

Susieg


Sun Oct 21, 2012 8:21 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Excessive sleeping
Susie, I was just thinking about this over the weekend. My mom is on none of those medications and still sleeps about 15-16 hours most days. When she's awake she's very coherent most of the time, but I wake her for breakfast, she's awake for an hour or so, then sleeps for a couple of hours til I wake her for lunch, etc. If we have appointments to attend she stays awake for those,but generally if we have nothing on our agenda for the day, she sleeps most of it. Right now she's reading a book that has to be returned to the library on Thursday, so she's been staying awake to read that. I wasn't sure if her excessive sleeping was due to her Lewy's or her CHF, so it's nice to hear that others are going through this, too.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Oct 22, 2012 11:03 am
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Excessive sleeping
It is so great to have this forum to bounce symptoms, problems, questions etc. off each other. Just knowing the 15-16 hours is pretty standard eases my mind. A couple of months ago I was trying to keep him awake more during the day but all that did was cause more stress for both of us. Letting him sleep for us is the better solution.

Susieg


Mon Oct 22, 2012 12:32 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Excessive sleeping
thanks for bringing this up.. my hubby is on serequel 25mlg and miritazphin in the evening for hallucinations.. this is a guy that used to sleep 4- 5 hours, tops...
now falls asleep in chair in front of tv no later than 7pm.. i wake him when i go to bed,, 10 or so to give him his meds to sleep)LOL and he sleeps most days till 9 am so that is about 14+ hours.. he can also fall asleep at the drop of a hat if he sits down in a chair any time during the day...

some of it is boredom/depression, im sure... hes always been a workaholic he loved working and staying busy.. and never had any hobbies or activities. loved to drive to his work and his shop... and now can do neither..some days he rakes and sweeps and pulls weeds and cuts down trees.etc. almost obsessively.. other days he just sits... and doses in and out for half of the day... never know what to expect!!
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Oct 22, 2012 1:07 pm
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Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Excessive sleeping
My Dad goes to bed at 9 oclock and 'sleeps' until about 12 the next day. He rarely sleeps during the day unless he is feeling a bit poorly or has had a bad night. He quite often will sleep the 15 hours and only get up once for the bathroom. It used to really worry me that he slept so much and I used to wake him early but since I have read that it is normal I just let him sleep.


Wed Oct 24, 2012 8:06 am
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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 108
Post Re: Excessive sleeping
My mom sleeps a lot during the day. I have no idea how much of the night she sleeps. She often has horrible lucid dreams at night and can't tell the difference between reality and dreams (even with a very high does of seroquil). I have no idea how many hours she is sleeping total, but I wish she would stop sleeping during the day so that the nights might go better. She tells me that she is terrified of night time and "the dreams." I really feel for her. I have no idea how to help her through the "hauntings." We are having to take books away from her because she obsesses about the books in which bad things happen. At first we took away the books that were frightening or scary stories about things like the holocaust. She then started to go through her history books to find scary stuff. She loves books and she loves to read, but I am now faced with the daunting task of finding literature that is not childish in nature but doesn't include anything stressful or scary or sad in it (or romantic for that matter - she pines over relationships that she doesn't have). I suppose there are lots of reasons besides the disease to sleep over in their situations. It is so very sad.

Liz


Wed Oct 24, 2012 1:31 pm
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Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: Excessive sleeping
My dad sits and watches the tv most of the day but I find that it I put a lot of action things on it confuses him as he believes it is all real. If I put news programmes on he worries that wars or tornados etc that he sees are happening in our area. So now I just put on music channels, quiz shows, and programmes like x factor and dancing on ice. He doesn't have anywhere near as many bad dreams as he used to when he watched everything on the tv. It's the same if we have too many visitors, he's fine for a while and then afterwards sleeps badly.


Sat Nov 03, 2012 12:57 pm
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Joined: Tue Apr 29, 2014 4:33 pm
Posts: 17
Post Re: Excessive sleeping
Hubby seems to be stretching out his sleep lately. He is sleeping up to 13 hours and maybe it would be longer if I didn't go in for my shower and dressing. Even then he will sleep. He may take a short nap during the day but mostly is awake. Of course, I'm not with him all the time. Does this sleep time increase rapidly or depends on the patient? There is certainly nothing that is scheduled in LBD; but I guess that is true in life.


Tue Jul 22, 2014 10:48 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Excessive sleeping
I don't think there's any simple answer to your question, unfortunately. Wouldn't it be helpful if there were at least a few norms with this disease? I think the only thing I could say is that generally, LBD patients (like others with serious illnesses) will tend to sleep more and more hours per day, especially towards the end. That seems to go along with not eating or drinking much, if anything. But, 13 hr. doesn't seem "excessive" and if he is still eating and drinking, I'd say just to let him sleep as much as he wants to.

People with TBIs tend to need much more sleep, like friends of mine who have had brain tumors/surgery or stroke. They need naps during the day, they need to sleep longer at night, and since LBD is a malfunctioning in the brain, it stands to reason that people with LBD would need more sleep.

If his eating and drinking habits have made a major nosedive, then I'd let the dr. know. Those 3 things together would be important for her/him to know. Lynn

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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 Jul 22, 2014 10:54 am
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Joined: Tue Apr 29, 2014 4:33 pm
Posts: 17
Post Re: Excessive sleeping
His appetite comes and goes. Since he sleeps so late, it is quite usual to have only 2 meals a day. I try to push snacks but he says he is just not hungry. A favority breakfast/brunch is 2 poached eggs on toast with hot milk poured over. It makes the toast easier to eat. He is going toward more soft foods. Last week he complained of a tummy upset but that receded. Still walking 1/2 miles a day. Went to Monday night band concert and we stayed for the whole thing at his request. He usually is ready to go home at intermission. He tells me when he thinks he needs to see the doctor. Before going he had a wobbly spell and I questioned if we should go. I didn't check bp but that fluctuates up and down like a yoyo at times. He also has atrial flutter and that is a factor. So I will continue to use his sleep time to get chores done around the house as he just slept through the garbage and recycle trucks picking up and emptying the containers near the bedroom!


Tue Jul 22, 2014 11:08 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Excessive sleeping
Sounds like he's doing pretty well, all things considered. So I'd agree with you - "let sleeping dogs, kids & husbands lie" and get your chores AND some respite in while he is sleeping! If he's able to walk 1/2 mile he's doing really well. 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 Jul 22, 2014 11:48 am
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