Michelle, is your dad on any medications for sleep?

He takes Serequel, Aricept, Sinemet. Along with bp meds and Celexa

Seroquel can be helpful for sleeping, but I think it can contribute to excessive daytime sleeping, too. Dosage and timing has to be tweaked just right.

Has your dad had REM Behavior Disorder? That is a sleep problem that involves acting out dreams, and the dreams are pretty repetitive and follow a pattern. The dreamer is often being chased by or fighting with a person or animal. This is very common about LBDers, often starting years before the LBD symptoms. There are good drugs for that.

sleeping is not a particularly productive activity for me…it holds no beauty…it is not attractive in its present form…

staying awake on the chance something good might happen….seems like a much better gamble….

I often think about this….it seems like I have a 4 hour cycle….or somewhere between 3 and 6 hours cycle….

where most times I get extremely fatigued…from out of nowhere….if I don't fight it….I am out….for a quick nap…

it usually doesn't last long and not that fruitful as far as rest….usually a dream or two thrown in for fun….and few jerking motions either falling asleep or waking up…

but…..I have learned to fight it….then the urge to submit….passes sometimes…sometimes it doesn't….

sometimes I can't fight it….and I sleep up to days….with no rest….

sometimes I can fight it for days….till I literally fall from exhaustion….

oh….almost lost this thought…

if I give in to the urge to nap every time it presents itself….that is all I do is nap….no long sleep….no rest….no normal for those around me….but….that would be my normal….

Hi Craig. You described Tom's sleeping pattern to a "T". We were so exhausted we couldn't do anything. Finally, Tom's Parkinsons neuro. adjusted the schedule on his Sinemet and added a low dose of Seroquel at night. Now we at least get 6 sometimes 7 hrs. a night. Daytime pattern remains the same regardless of activity or lack thereof. Don't know what meds you're on, but maybe your dr. can adjust the times, etc. so you can get some sleep on a regular basis. Until we got that worked out, it was impossible to tell if Tom's other meds. were really helping. We've stopped trying to fight the up and down naps during the daytime (which change from day-to-day) and just go with the flow. Some days are more productive than others, but definitely less stressful. Good luck. Kathy
P.S. I also think the hallucinations he suffers during his naps somehow lessen the delusions he has during his waking times.(?)

My mother sleeps a lot during the day when she isn't having gut pain or episodes of hysterics. She always has (even when i was a kid). The problem, as I see it, is that she then can't sleep at night. She wants the psychiatrist to always give her medications for sleep (which he won't - she has a history of getting dependent on these things). She has awful lucid dreams and nightmares and I keep thinking "if only she would be tired at night, so she could sleep." The last ALF that asked her to leave did so based on the problems she was making for other people at night (she would wander around the halls crying, screaming, fussing). So - I am not sure how to negotiate the sleep issue either. Does anyone find that they need to keeping a loved one up during the day helps with nightime behavioral problems? The information on brains slowing down and needing more sleep is very interesting. I will have to purchase that book.

Liz

Just searching the posts and stumbled across the Excessive Sleeping. I am so glad that I did. My husband, Ron, sleeps so very much. He generally goes to bed about 8 or 8:30 in the evening, gets up anywhere from 10 to noon. We have to wake him up, he will not wake himself up till much later. He gets up, naps, eats breakfast, watches tv or naps, naps, eats lunch, naps, wakes up when I come home, naps, eats supper, generally stays awake for a couple of hours, bed. I used to feel so guilty about letting him sleep, but then realized it made no difference. He was going to sleep. Our son is over working on his car and he has dragged Ron outside to sit in a chair to help (?). So, Ron has stayed awake a little longer, just naps outside. He is very sensitive to cold weather. Hopefully, I can get him bundled up and enjoy the mild fall weather. That would be good for both of us.

Katie, Your husband's routine sounds just like my husband's. The only time it changes is when I force him to go someplace (doctor's, family) and then he sleeps even more for the next couple of days.

My MIL gets up at 9:30 am and then dozes in her chair whenever the caregiver is here. She won't lay down. But on the weekends when it is just me, she will sleep until 11-noon and take at least two naps for 1-2 hours each. We go on her schedule and adapt to her. A lot less stressful on both of us. I think that she uses up her energy trying to stay focused and comprehend what is going on so that she has to sleep to replenish what little cognition and energy is left.

Just like my mom, too - she doesn't sleep late every single day, but last night, for example, she went to bed around 7:30 and didn't get up till noon. This is, however, an improvement over pre-seroquel, when she'd get up at least 4 or 5 times and often more at night, and would wake up my father claiming that the building was on fire, or my cousin was in the hall coming to visit, or some such. Then she would doze off and on all day. Just the tiniest dose of seroquel seems to shifted her sleeping to a schedule that's more caregiver-friendly for my dad. And this thread and other comments have helped to convince him that this is to be expected, and not to worry.

So thanks to all of you for the tapestry of pictures of caregivers, LBD, and the different challenges everyone is facing. It is a huge help (and a nice complement to my first instinct of running to look at and evaluate the research, which is helpful in a very different way.)
Laurel

Ron, husband, has started some physical therapy for strength. He actually fell asleep in the middle of it! The therapist had him lay down on a table and put a giant rubberband around his knees. He had to pull them apart. Fell asleep after doing it 5 times. Can't change it. That is my sweetie.

Mom still CAN stay awake when circumstances call for it, as when we went to my sister's yesterday for about 5 hours and when her sister came in and visited for about 3 hours. But she'll probably crash big time today and tomorrow. (I'm at work, so I wont' know till I get home) I used to be concerned that when she slept all day she'd stay up all night, but no, it doesn't seem to affect that. Or if she does stay awake, she just lies awake. Right now we're blessed that she rarely gets up at night. Whether she gets up at 10 a.m. or 5 p.m., and regardless of the number of naps, she is ready to go to bed between 9:30 and 10 p.m. or perhaps a little sooner or a little later. She herself gets a little troubled about being sleepy so much, though. "Why am I so sleepy? I don't think I've worked hard today, have I?" "Well, your body probably knows what it needs, Mom," I try to reassure her. I sort of think she's tired pretty much all the time, but if she has a good reason to put sleep off, she rallies the strength to do so. I can relate to that at times.

The Rally is to be expected with Lewy Body. So much so that it has a name and is called "Show Time". Later the rest is also needed. That's why it is so difficult for those who are seldom around to understand why you are concerned. They do not see her the next day and night... and day and night. Dorthea

I haven't written for a while but was interested in excessive sleeping as Wayne has been sleeping at least 22 hours a day and the Hospice nurse said this was a sign that the end was near. This has been happening for the last 4 to 5 days. He is eating very little and never seems to want food. What will happen next - will he just quit breathing? How long will this continue before he dies? This waiting is very difficult and I know everyone is waiting, and waiting.

You might find this helpful http://dying.about.com/od/thedyingprocess/a/process.htm and, if you have time to watch it [about an hour, I think] this is very informative: http://www.youtube.com/watch?v=PPx-qpos57g. It is a video of 'Gone from My Sight', a Hospice brochure on the dying process.